Sudden change in migraines

[Spryte]

I’ve had migraines since I was 28. Over the years, there have been some major changes to the patterns and what helps/doesn’t. I seem to be in the midst of another change. Any tips to get them back to more manageable would be appreciated.

Up until maybe 5 years ago, they were 4 day affairs that landed me in bed the entire time. Not possible to function through, like some do. I found a way to tolerate with a combo of meds, and suffered through. I had 3-4 of these episodes a month, so significant impact to life. I have an old neck injury that is part of the cycle, so we sometimes added Valium in to control muscle spasms. A big part of the whole experience was chalked up to trigeminal neuralgia (aka the suicide disease, yikes), and we worked on that, too.

Fast forward, my nerve issues improved, and I found a great migraine preventative, and taken daily, it cut the migraines down by a day or two, and lessened the monthly occurrences, as long as I took a triptan twice daily for four days. That was enough to make things so I could semi-function enough to do school and keep the house running.

Things improved steadily, and I made it to one migraine every few months. Joy!

But now I’m on Day 4 of a migraine like my old ones. Second in a 6-8 weeks or so, and it’s big and ugly. I’ve barely left the bed. The muscle spasms are back and extend all the way down my back on the one side, like the old days. Nauseated upon standing or any movement. I’m slathered in Icy Hot. My triptan med takes the edge off, but due to mystery liver issues, I’m reluctant to take it, so have only had two doses through this ordeal. I’mwondering if that’s where I’ve gone wrong, and why this is so severe now, ugh!

I don’t want to backslide into frequent episodes like this. But I’m also reluctant to go to the neuro or my regular doc right now, if there are any changes I can make at home, things I can try before going in. So any tips would be appreciated!

[Corbster98]

Nm

 

Edited January 19, 2022 by allySW

[Katy]

I’d go ahead and take the triptan if they help. I can’t imagine anything they gave you at the ER wouldn’t be just as hard on your liver if you decided to go in. Except maybe oxygen.

A migraine & trigeminal neuralgia (also cluster headaches, which I get) seem to involve a histamine and serotonin storm in the hypothalamus. That storm causes a vein that runs near the trigeminal nerve to swell to 2-10x it’s normal size, pressing on the nerve and triggering the symptoms. So anything that lowers swelling & inflammation OR histamine can help. That includes:

-energy drinks or shots. Or coffee if you can stand it. The caffeine makes that blood vessel constrict.  The sugar free shots at Aldi are the most cost effective but taste nasty. Watermelon Monster Ultra tastes like a watermelon jolly rancher but they’re getting more difficult to find and more expensive. 

-100% oxygen with a mask for 15 minutes if you haven’t tried it yet. You need to get a prescription from a neurologist for the rental but if it helps it will wipe it out in 15 minutes.  

-drinking a liter of cold water really fast. Your body releases histamine when dehydrated because it also releases stored water, both the water and the cold can help stop this. 

-avoid high histamine foods and aged proteins (like cheese, any meats or fish not stored in the freezer, any pork, anything you’re allergic to, and temporarily avoid avocado, tomato and bananas until the headache has been gone a few days). This is controversial but helps reduce the number and severity for me. 

-I always found going out in the cold helped, and exercise would stop a headache but it would come back worse later. 

-I take an anti-inflammatory spice cocktail of turmeric, ginger, and cinnamon supplements. The cheap kind from Walmart works as well as buying organic spices and filling capsules myself. Garlic is also anti-inflammatory but I haven’t found it helps me. 

There is probably new information on clusterheadaches.com, I stopped hanging out there maybe 15 years ago when several people I was friends with on that message board died, some from suicide. I will warn you that unless something has changed, they’re a surly group with terrible tempers. Blame the pain. But their pinned stuff does have good information. 

-While I’ve never tried it because when I was at my worst I had a family member with a federal security clearance to worry about, things that may not be legal in many areas like micro-dosing hallucinogenic mushrooms or lsd can put many people into remission for 6 months at a time. Clusterbusters website used to have information on this. 

[Tap]

1 hour ago, Katy said:

I’d go ahead and take the triptan if they help. I can’t imagine anything they gave you at the ER wouldn’t be just as hard on your liver if you decided to go in. Except maybe oxygen.

A migraine & trigeminal neuralgia (also cluster headaches, which I get) seem to involve a histamine and serotonin storm in the hypothalamus. That storm causes a vein that runs near the trigeminal nerve to swell to 2-10x it’s normal size, pressing on the nerve and triggering the symptoms. So anything that lowers swelling & inflammation OR histamine can help. That includes:

-energy drinks or shots. Or coffee if you can stand it. The caffeine makes that blood vessel constrict.  The sugar free shots at Aldi are the most cost effective but taste nasty. Watermelon Monster Ultra tastes like a watermelon jolly rancher but they’re getting more difficult to find and more expensive. 

-100% oxygen with a mask for 15 minutes if you haven’t tried it yet. You need to get a prescription from a neurologist for the rental but if it helps it will wipe it out in 15 minutes.  

-drinking a liter of cold water really fast. Your body releases histamine when dehydrated because it also releases stored water, both the water and the cold can help stop this. 

-avoid high histamine foods and aged proteins (like cheese, any meats or fish not stored in the freezer, any pork, anything you’re allergic to, and temporarily avoid avocado, tomato and bananas until the headache has been gone a few days). This is controversial but helps reduce the number and severity for me. 

-I always found going out in the cold helped, and exercise would stop a headache but it would come back worse later. 

-I take an anti-inflammatory spice cocktail of turmeric, ginger, and cinnamon supplements. The cheap kind from Walmart works as well as buying organic spices and filling capsules myself. Garlic is also anti-inflammatory but I haven’t found it helps me. 

There is probably new information on clusterheadaches.com, I stopped hanging out there maybe 15 years ago when several people I was friends with on that message board died, some from suicide. I will warn you that unless something has changed, they’re a surly group with terrible tempers. Blame the pain. But their pinned stuff does have good information. 

-While I’ve never tried it because when I was at my worst I had a family member with a federal security clearance to worry about, things that may not be legal in many areas like micro-dosing hallucinogenic mushrooms or lsd can put many people into remission for 6 months at a time. Clusterbusters website used to have information on this. 

The Above information is great. If you are concerned about Covid and that is why you are avoiding the doctor, ask for a televisit. Dd23 does this with her migraine specialist and other docs as well. Especially ones that really just need to talk to you vs seeing you irl. 
 

dd23 is in Emgality which really helps cuts most of hers down to normal headaches. She also takes a supplement called Dolovent which was recyby her pain specialist. She has a noticeable reduction taking it as well. We have been researching psilocybin too, and keeping an eye on that research . 
 

it sounds like something has changed for you but it is so hard to backtrack and find it!!! I hope you figure it out 

 

(((hugs)))

Edited January 19, 2022 by Tap

[Katy]

Oh yeah, doesn’t indomethacin treat TN? I think it puts many people into remission. It’s in the same family as advil so it shouldn’t do a lot of damage to your liver but it will DEFINITELY give you an ulcer. An ulcer is easier than TN though!

[prairiewindmomma]

Do you have a pattern to your migraines? A specific trigger?

For me, I have to eat lower carb + sleep sufficiently + take magnesium & other minerals + b supplementation + allergy meds to keep my baseline of goodness. There isn't a lot I can do to stop it once it starts, but caffeine + immediately laying down sometimes keeps my migraine to just a couple of hours and pain only. I usually will vomit 10-12x in the first couple of hours if I can't head it off.

Is there a reason you can't telemedicine with a neurologist? Or get on the wait list? It takes 3-6 months to get a new appointment for migraines. I highly recommend keep on trying Rx drugs until you find a good match.  You can do more frequent metabolic panels and keep an eye on the liver.  I find that I can buffer some of the liver toxicity with taking high doses of turmeric + avoiding too much meat. 

[J-rap]

I'm sorry.  My dh's migraine's progressively got worse and worse.  He found the book "Heal My Headache" to be quite helpful.

But for our four dd's (it's a strong gene in our family!), they have weird patterns like yours.  That is, they seem to be better (for several years), and then weirdly, they get worse again.  For two of our dd's who haven't had bad ones regularly for years, they are suddenly getting them much more often, and worse, in the past 6 months.  And they live in different parts of the world.  It's really strange.  So I don't have an answer for you, except that I think a change in patterns is not particularly unusual.  

[Farrar]

Mine don't have the absolute severity of yours, but I'll just say that I've had some similar long term ups and downs with my migraines. I keep getting these long periods without them now, which is amazing. And then I'll get another one that feels like it time traveled from a decade ago to attack me. I've really had to school myself to not panic about that because tension about getting a migraine was definitely part of making my migraine cycles worse and worse. I've had to realize that sometimes I just get one like that still. And that it doesn't mean it's inevitable that I'm going to go back into my old patterns.

I assume you've done some caffeine? Which Katy also suggested. I'm not a caffeine person and when my triptans aren't working that's sometimes something I've forgotten to do. When I have a headache that's thinking about becoming a migraine and I do a big shot of caffeine, it can make me antsy and prolong a new migraine because I can end up sleep deprived. But when I'm in the middle of it, sometimes I really need a megadose of caffeine and it actually makes me sleep.

[Scarlett]

When I was a teen I had several years of very bad headaches.  Well, even as a child I did.  Then I did ok for many years up until I was perimenopausal.  They came back with a vengeance.  But I could never for sure say they were hormonally triggered.  It seemed to me a hard day of housework was just as likely to trigger it as anything. Probably stress?  I remember several times when I had planned weekend trips just absolutely not being able to function and having to stay home.

But anyway, mine have stopped again.  Probably for the last 5-6 years?  I can't remember exactly when they stopped, but one day I realized I had not had a headache like that for a long time.  Even though the last 3 years of  my life has been the most stressful and traumatic of my entire life.  

@Katylisted soooo many good things that worked for me over the years.  The strong coffee helped a lot of the times.  Ice to my head helped many times.  And a few times I did the Ice to my head with feet in a warm shower....at least I think that was it.  

[Katy]

Oh, peppermint essential oil to the temple on the affected side can knock the pain down maybe 10-15%. Don’t do this if you have sensitive skin, and definitely don’t use other oils (citrus especially can cause photosensitivity), but it’s worth a try if you have some on hand.

Edited January 19, 2022 by Katy

[Spryte]

Thank you all. I’m reading every response and sharing with DH, so he can help me implement, make appointments, whatever is needed. He suggested I write to my doc via the patient portal and get things started. He thinks she would likely call in anything I ask, within reason (we have a long, long history together).

I ordered some energy shots through Instacart, and drank one as soon as it arrived. Also, lots of cold water. I am sitting up and eating food, so — improvement! I’ll take any minor improvement. The caffeine is probably helping. I could not stomach coffee, but I’m sure my caffeine withdrawal was making things worse.

I also ordered more Icy Hot, which does seem to help. I can try peppermint oil, as well, sounds like a similar effect and maybe less extra ingredients.

Oh, and I pulled out the old Theracane to try to gently work on some knots that have suddenly appeared. Hoping that helps, too.

@Farrar You touched on the emotional end of this, for me. I had years of losing life due to not just migraines but some other issues, and was bedbound, basically. Horrible times. Any time I go down hard for a long time, it’s easy to slip into fear that I will end up like that again. Thanks for reminding me not to head down that depressing road.

Still reading everything, and taking notes. Thanks, all!

So sorry that any of you have suffered, but thanks so much for sharing your experience.

 

[Laurel-in-CA]

My dd has migraines, not quite as severe since she can work through them if she must, and they were happening several times a week. For christmas this year we got her a device called Cefaly, which does electro stimulation. https://www.cefaly.com

It's pricey but the other things she's tried (supplements, medications, diet control) haven't helped much. It has a preventive mode and a mode for stopping migraines in process. Is said to induce sleepiness after treatment. We're only in the first stages of trying it so I can't give you personal evidence, but I thought you might want to look into it.

[TravelingChris]

I was living in Belgium when I got my first four day migraine which really negatively affected my vacation that we were having in Bretagne.  I had had other longer and worse migraines around that time too but that one is the most memorable.

 

I had been having migraines since I was seven and after I started 4aking bc pills in my second yezr in college, I deveoped what was eventually diagnosed as hémiplégic migraines.  Those didn't hurt, just basically made doctors think I had something close to MS.  

I went to a Belgian  neurologist who gad read a then recent study in thr lancet about how 400 mg of riboflavin helped w severe and even not so severe ones.  It worked.  Oh and he wanted me to try that versus some other meds due to all my other chronic illnesses and the medications they required 

And I don't get hardly any headache migraines anymore but do get abdominal migraines and spacey migraines.

[kbutton]

23 hours ago, prairiewindmomma said:

For me, I have to eat lower carb + sleep sufficiently + take magnesium & other minerals + b supplementation + allergy meds to keep my baseline of goodness. 

You can do more frequent metabolic panels and keep an eye on the liver. 

This is pretty close to what I do, and some of these things are for clusters of other issues, but it seems like migraines worsen when those things aren't taken care of. I kind of describe myself as someone who gets headaches when anything isn't right in my body, and sometimes, those headaches are migraines. 

I also avoid caffeine (but having it for a migraine helps). I avoid caffeine for other reasons (most caffeinated drinks have properties that irritate my bladder, and tea both irritates my bladder and gives me heart palpitations). I don't have liver issues, but I think having levels tested more often in order to allow you more options makes a lot of sense.

I went GF and I mostly avoid nightshades--that seems to keep things under control. Prior to that, I would get some that would be very resistant to treatment; for me at that time, nausea was the biggest issue. 

Weather is a big trigger for me, especially pressure changes (and it's a trigger for the other family members who get them). 

On 1/19/2022 at 2:14 PM, Katy said:

I’d go ahead and take the triptan if they help. I can’t imagine anything they gave you at the ER wouldn’t be just as hard on your liver if you decided to go in. Except maybe oxygen.

A migraine & trigeminal neuralgia (also cluster headaches, which I get) seem to involve a histamine and serotonin storm in the hypothalamus.

Do you have links for the information about the histamines, serotonin, and hypothalamus connection? That's fascinating. I have vague issues related to some of those other things, as in, I see a specialist for what acts like mast cell activation syndrome (but he can't rule it in our out without testing that is overly invasive when things are under control). When things are not under control, I have issues with things related to thyroid, but it's always subclinical (even with someone that treats more aggressively and comes highly recommended for treating thyroid) and always seems to be about that hypo-pituitary axis. When it's all a mess, I also seem to get anxiety that is directly tied to the mess--like, I can make it worse with food, which is how I ended up GF.

I also see a chiropractor, which has done amazing things for the muscle spasms and cramps (as does taking magnesium and potassium). I have had chiropractors who aren't helpful and one that was a mix of helpful and might have made some things worse. I currently have one that is amazing. I used to have a lot of trigeminal pain, but if the chiropractor adjusts my atlas and will work on keeping my sternocleidomastoid muscle limber, then it goes away. If he doesn't, then it comes back and it brings pain that seems like thoracic outlet syndrome at the same time. 

Anyway, very interesting to hear this. 

[Katy]

1 hour ago, kbutton said:

This is pretty close to what I do, and some of these things are for clusters of other issues, but it seems like migraines worsen when those things aren't taken care of. I kind of describe myself as someone who gets headaches when anything isn't right in my body, and sometimes, those headaches are migraines. 

I also avoid caffeine (but having it for a migraine helps). I avoid caffeine for other reasons (most caffeinated drinks have properties that irritate my bladder, and tea both irritates my bladder and gives me heart palpitations). I don't have liver issues, but I think having levels tested more often in order to allow you more options makes a lot of sense.

I went GF and I mostly avoid nightshades--that seems to keep things under control. Prior to that, I would get some that would be very resistant to treatment; for me at that time, nausea was the biggest issue. 

Weather is a big trigger for me, especially pressure changes (and it's a trigger for the other family members who get them). 

Do you have links for the information about the histamines, serotonin, and hypothalamus connection? That's fascinating. I have vague issues related to some of those other things, as in, I see a specialist for what acts like mast cell activation syndrome (but he can't rule it in our out without testing that is overly invasive when things are under control). When things are not under control, I have issues with things related to thyroid, but it's always subclinical (even with someone that treats more aggressively and comes highly recommended for treating thyroid) and always seems to be about that hypo-pituitary axis. When it's all a mess, I also seem to get anxiety that is directly tied to the mess--like, I can make it worse with food, which is how I ended up GF.

I also see a chiropractor, which has done amazing things for the muscle spasms and cramps (as does taking magnesium and potassium). I have had chiropractors who aren't helpful and one that was a mix of helpful and might have made some things worse. I currently have one that is amazing. I used to have a lot of trigeminal pain, but if the chiropractor adjusts my atlas and will work on keeping my sternocleidomastoid muscle limber, then it goes away. If he doesn't, then it comes back and it brings pain that seems like thoracic outlet syndrome at the same time. 

Anyway, very interesting to hear this. 

I don’t think I saved any links. I was researching for me, not to present to someone else. But I can tell you more of what I know. Cluster headaches used to be called histamine headaches because they figured out limiting dietary histamine eliminated them for something like 38% of patients. But for others it makes no difference. I think somewhere along the way they decided headaches influenced by foods were always migraines, and cluster headaches, SUNCT, or TN weren’t controllable. At the same time they made the sexist assumption that only men get the severe headaches, women are just hysterical complainers.🤨

Anyway I’ve had bad allergies and mysterious rashes my whole life. I had a neurologist who prescribed thyroid meds for my borderline numbers, I started sleeping better, and then my headaches improved. 

I wasted thousands on chiropractic when I first got diagnosed with cluster headaches. The chiropractor made no difference for me, though I did get warned by my neurologist that the most common reason for strokes in women in their 20’s was chiropractic neck adjustments, which can cause microscopic clots that migrate to the brain. 

A low histamine diet is always worth a try if you have mast cell symptoms, IMO. 

[Spryte]

Spinning off a few points, I also have mast cell issues, and frequent unexplained hives. In fact, I had a big bout with hives maybe 36 hours before the recent migraine. Plus, we had an ice storm move in overnight, when the migraine developed. I’m sure those are likely related. Weather is always the last thing I consider.

Chiropractic work doesn’t do anything for me, but, oddly, visceral manipulation is a game changer. My doc does some amazing work, and I simultaneously love and hate it (it’s painful in the moment, and strangely unintuitive to realize that our headaches are connected to our guts). The results are always noticeable. I probably need a tune up. 

I realized also that I have not been taking one of my regular supplements, which sort of fell off the wagon when I ran out last. Bulouke. I normally take it for hyper-coagulation (aka sludgy blood). So, I’ve ordered more.

This is Day 5, and it’s the first day I’ve been up and moving around. Feels like I’m dragging myself through a pool of water, I’m just exhausted.

Thanks so much to all of you for the suggestions — I found quite a few that we could immediately implement, and they seemed to help.

 

[kbutton]

1 hour ago, Katy said:

A low histamine diet is always worth a try if you have mast cell symptoms, IMO. 

I do some version of one, but some things bother me not at all and some things not on a histamine list bother me (I know they all vary!). My allergist wants me to add foods back in when I am stable because it is pretty restrictive. Not all of what bothers me makes sense though, so it's weird! I don't plan to eat tons of things I add back in--maybe rotate them. 

I don't get hives, but I do get intense itching in specific places, and my ears get very hot. Sometimes I will not look rashy unless you take a picture of me or look in the mirror, which is just plain odd. That said, I have had mild hives that look like a mild rash and then when something else "topped me up," I would get more typical hives. 

I swear everything that happens to me is subclinical. Even things that shouldn't be hard to notice or diagnose present in a subtle way for me. I also tend to make adjustments if I can see a pattern, which might affect a clinical presentation.

I don't have a lifelong pattern of weird that can be connected, just a few odd things that might or might not be related. Things became acute starting after my first pregnancy and getting so much worse after being on nasty antibiotics for MRSA (we live in a hotspot). If I had the allergist then that I have now, I might have more answers. My allergist then was a good one, but I was also pretty careful what I told her + I saw her between the initial body-went-haywire-pregnancy and the bout with the antibiotics.

39 minutes ago, Spryte said:

I realized also that I have not been taking one of my regular supplements, which sort of fell off the wagon when I ran out last. Bulouke. I normally take it for hyper-coagulation (aka sludgy blood). So, I’ve ordered more.

IIRC, clotting disorders and migraines can be linked. We have both in my family, though only person has a definitive diagnosis for his clots (one of the anti-phospholipid antibodies, which you can have without forming clots!), it's not definitely genetic (but might be! not conclusive), and the person I am most closely related to with clots has a doctor that is unwilling to test him (it doesn't matter because he's on blood thinners!). 

[Tap]

On 1/20/2022 at 4:42 PM, Spryte said:

Spinning off a few points, I also have mast cell issues, and frequent unexplained hives. In fact, I had a big bout with hives maybe 36 hours before the recent migraine. Plus, we had an ice storm move in overnight, when the migraine developed. I’m sure those are likely related. Weather is always the last thing I consider.

Chiropractic work doesn’t do anything for me, but, oddly, visceral manipulation is a game changer. My doc does some amazing work, and I simultaneously love and hate it (it’s painful in the moment, and strangely unintuitive to realize that our headaches are connected to our guts). The results are always noticeable. I probably need a tune up. 

I realized also that I have not been taking one of my regular supplements, which sort of fell off the wagon when I ran out last. Bulouke. I normally take it for hyper-coagulation (aka sludgy blood). So, I’ve ordered more.

This is Day 5, and it’s the first day I’ve been up and moving around. Feels like I’m dragging myself through a pool of water, I’m just exhausted.

Thanks so much to all of you for the suggestions — I found quite a few that we could immediately implement, and they seemed to help.

 

My daughter that I was talking about above in regards to her migraines, also has chronic urticaria. Her hives can get to the size of saucers. She always has some hives, but they only get big if she is really flared up. Luckily she figured out that it was various forms of sulfates/sulfites that were her biggest offenders. So no wine unless it is organic and even then in limited quantities, limited beer and limited dried fruit. There are a few others, but those are the worst for her. When she was in a horrible place with hives, it took months to get her under control. She is really respectful about limiting the worst offenders and listening to her body when it starts to get really itchy!  (she is always somewhat itchy/hivey not matter how clean she eats). 

She finds that oral cromolyn really helps. It is hard for her to do for various reasons, but honestly, it was life changing for her at one point. She goes back on it, if she feels like she is flared up. If you haven't looked into it, it can be worth the try for you to consider. 

She has the trifecta of Mast Cell Activation, POTS and EDS. If you haven't looked in to these other disorders, you might consider it. Migraines are a common trait in the grouping 

[Spryte]

38 minutes ago, Tap said:

My daughter that I was talking about above in regards to her migraines, also has chronic urticaria. Her hives can get to the size of saucers. She always has some hives, but they only get big if she is really flared up. Luckily she figured out that it was various forms of sulfates/sulfites that were her biggest offenders. So no wine unless it is organic and even then in limited quantities, limited beer and limited dried fruit. There are a few others, but those are the worst for her. When she was in a horrible place with hives, it took months to get her under control. She is really respectful about limiting the worst offenders and listening to her body when it starts to get really itchy!  (she is always somewhat itchy/hivey not matter how clean she eats). 

She finds that oral cromolyn really helps. It is hard for her to do for various reasons, but honestly, it was life changing for her at one point. She goes back on it, if she feels like she is flared up. If you haven't looked into it, it can be worth the try for you to consider. 

She has the trifecta of Mast Cell Activation, POTS and EDS. If you haven't looked in to these other disorders, you might consider it. Migraines are a common trait in the grouping 

This is very helpful, thanks! 

Your DD has been through so much.

I do have POTS and my doc suspects Mast Cell Activation. I don’t know EDS, but have a slew of other things going on. I’m sure it’s all interconnected. Something seems to be flaring up for me at the moment.

[Tap]

8 minutes ago, Spryte said:

This is very helpful, thanks! 

Your DD has been through so much.

I do have POTS and my doc suspects Mast Cell Activation. I don’t know EDS, but have a slew of other things going on. I’m sure it’s all interconnected. Something seems to be flaring up for me at the moment.

She really has 😞 She is such a charismatic and sweet person and always acts like nothing is wrong. Her husband is an absolute gem in taking care of her. 

It can be hard to get a MCAs diagnosis, but you can still treat the symptoms like you have it and see if it helps.  My daughter sees a Naturopath who is a pain specialists at OHSU (a well regarded teaching hospital in Portland Oregon). It can take a year to get an appointment with her, but if you can't get answers in other places, I can give you her information if you are up for traveling. This NP is the one who really turned dd's life around. She worked on finding diagnosis for dd, instead of just pushing her off to other doctors.  She really takes time to understand and explain information to/from her patients, which is so nice!!! 

Edited January 22, 2022 by Tap

[Spryte]

12 minutes ago, Tap said:

She really has 😞 She is such a charismatic and sweet person and always acts like nothing is wrong. Her husband is an absolute gem in taking care of her. 

It can be hard to get a MCAs diagnosis, but you can still treat the symptoms like you have it and see if it helps.  My daughter sees a Naturopath who is a pain specialists at OHSU (a well regarded teaching hospital in Portland Oregon). It can take a year to get an appointment with her, but if you can't get answers in other places, I can give you her information if you are up for traveling. This NP is the one who really turned dd's life around. She worked on finding diagnosis for dd, instead of just pushing her off to other doctors.  She really takes time to understand and explain information to/from her patients, which is so nice!!! 

Thanks! How does your DD treat the MCAS, if you don’t mind my asking?

My doc was fairly certain about MCAS right before Covid started, and we didn’t pursue any testing. (Is there testing?) She has me take Pepcid daily, and hydroxyzine for the hives. I had a mystery liver then GI issue last spring, and my GI doc got really excited about the possible MCAS, felt it would explain everything. She recommended I see an allergist to explore further. So I really need to look into it more!

I’m not ready to travel yet, if only we had transporters! Your DD’s doc sounds wonderful.

Edited January 22, 2022 by Spryte

[Tap]

Before we saw the NP, we had gone to a allergy doctor who supposedly specialized in MCAS. But during the visit, he told us he had never seen or diagnosed anyone with it and didn't feel dd met the criteria. LOL  Odd thing, to be a specialist, but to have never seen it in person. It was truly, like he didn't believe it existed. At that time, dd would just get a bit of hives and had some of the other characteristics. I don't remember if she was diagnosed with MCAS before or after her 2020 outbreak. (see below). But her NP never wavered on her having MCAS. It was so very obvious based on her history that she had it. 

She had her horrible hive outbreak in 2020. DD lived with various stages of severe hives for 3-4 months. I'll add a couple of pictures for fun LOL. Her leg under the other one, is pretty much one solid hive. The arm picture, shows how thick and swollen they were. Look at the outline of her arm, the edges are usually long and straight (she is thin and tall).  She was at the ER the day of the pictures, and the doctor was impressed with the size, but told her she needed to come in sooner next time. (She was a week or so into this outbreak at this point.) LOL She had a few ER visits a dose or two of EPI, some IV treatments and it still took 3 months of 60mg prednisone to make real progress. She had angioedema a few times and those were a bit concerning.  The 60mg prednisone would keep them in check (not gone, but manageable) but you can live on it forever. We had to make up a very slow prednisone taper. She had to taper by 1mg a day, or her hives would flare again. So it took a long time to go off it. She also took 4 Allegra and 4 Zyrtec a day, ranitidine and various other supplements for hives. She looked like this, or slightly better, for almost an entire summer. So, yeah. She has MCAS. 🙃Her everyday hives are dime to quarter size and are scattered. Those aren't too worrisome, she has lived with those for years.  I would say on any given day, if you squished her hives together, they would be about the size of a baseball or softball. 

The oral cromolyn really helps her hives. It helps by helping the mast cells from breaking down in the first place. There is some conflicting information that makes it seem harder than it is. DD's doctor lets her take it with food and drink and it doesn't cause her trouble as long as she does a taper over a few days. (Some people do a very long, grueling taper, but she doesn't need to).

She takes either Zyrtec or Allegra every day. If her hives are getting closer to quarter sized, she adds 1-3 doses of the alternate one daily to help her body fight them off. Benadryl doesn't make her sleepy, so she can take that around the clock as well. 

 

Feel free to ask any questions, she doesn't mind if I talk about her. Especially if it helps someone else. She saw 20 specialists over a couple years, trying to figure out her health issues. She knows how hard it is to get information!

[Spryte]

On 1/21/2022 at 11:57 PM, Tap said:

Before we saw the NP, we had gone to a allergy doctor who supposedly specialized in MCAS. But during the visit, he told us he had never seen or diagnosed anyone with it and didn't feel dd met the criteria. LOL  Odd thing, to be a specialist, but to have never seen it in person. It was truly, like he didn't believe it existed. At that time, dd would just get a bit of hives and had some of the other characteristics. I don't remember if she was diagnosed with MCAS before or after her 2020 outbreak. (see below). But her NP never wavered on her having MCAS. It was so very obvious based on her history that she had it. 

She had her horrible hive outbreak in 2020. DD lived with various stages of severe hives for 3-4 months. I'll add a couple of pictures for fun LOL. Her leg under the other one, is pretty much one solid hive. The arm picture, shows how thick and swollen they were. Look at the outline of her arm, the edges are usually long and straight (she is thin and tall).  She was at the ER the day of the pictures, and the doctor was impressed with the size, but told her she needed to come in sooner next time. (She was a week or so into this outbreak at this point.) LOL She had a few ER visits a dose or two of EPI, some IV treatments and it still took 3 months of 60mg prednisone to make real progress. She had angioedema a few times and those were a bit concerning.  The 60mg prednisone would keep them in check (not gone, but manageable) but you can live on it forever. We had to make up a very slow prednisone taper. She had to taper by 1mg a day, or her hives would flare again. So it took a long time to go off it. She also took 4 Allegra and 4 Zyrtec a day, ranitidine and various other supplements for hives. She looked like this, or slightly better, for almost an entire summer. So, yeah. She has MCAS. 🙃Her everyday hives are dime to quarter size and are scattered. Those aren't too worrisome, she has lived with those for years.  I would say on any given day, if you squished her hives together, they would be about the size of a baseball or softball. 

The oral cromolyn really helps her hives. It helps by helping the mast cells from breaking down in the first place. There is some conflicting information that makes it seem harder than it is. DD's doctor lets her take it with food and drink and it doesn't cause her trouble as long as she does a taper over a few days. (Some people do a very long, grueling taper, but she doesn't need to).

She takes either Zyrtec or Allegra every day. If her hives are getting closer to quarter sized, she adds 1-3 doses of the alternate one daily to help her body fight them off. Benadryl doesn't make her sleepy, so she can take that around the clock as well. 

 

Feel free to ask any questions, she doesn't mind if I talk about her. Especially if it helps someone else. She saw 20 specialists over a couple years, trying to figure out her health issues. She knows how hard it is to get information!

Oh my goodness. Those are some serious hives. It’s miserable to have hives, what a nightmare for her.

I do have some more questions, if you don’t mind talking about it. I will have to come back with them, as it’s late, but I wanted to respond since you posted this a day ago and I’m just seeing it now.

Thank you! More soon!