JAWM--Me and my head

[PeterPan]

I banged my head sledding and re-aggravated several head injuries from the past few years. (two unfortunate blows to the head that resulted in concussions, one injury in a cave in Cozumel which I own happily, one falling in a river in Missouri cuz man those rocks are slippery, and even a few miscellaneous head bangings on car doors and things) I've now done 31 sessions of HBOT and 6 sessions of cranial sacral. I've gone from a level 9 on my headaches, slow speech (about 50%), slow movements, vertigo, and nausea, to level 1.5 headaches, perky speech, normal movement, no vertigo/nausea. BUT I can't kick these stupid headaches or the sense that I'm still not right! And they don't go away with aspirin and taking anything stronger is hard on my liver and leaves me with rebound headaches.

And frankly, my 1.5 headache is probably worse to somebody else. I mean, I'm under responsive for sensory and birthed an 11 pound kid at home, lol. It's just they went down so nicely, like literally down 1-1.5 each week, and it seems to have plateaued. I've been at 1.75, 1.5 ish for at least two weeks now. 

Two weeks ago I was able to play board games (Trouble, Carcassone). I got through Ticket to Ride London (17 train cars, very short) but my brain completely melted by the end, like just DONE, nothing left. I haven't tried anything cognitively challenging since. I did remember a phone number from seeing it to dial it, so that tells you I'm holding digits better. 

Like I said, it's JAWM. I was on this roll, like wow a bit better every time, 3% better with every HBOT session. Now it's just grind, grind, smaller increments. And that return of my sort of energy and vibrancy isn't also bringing the headache relief. It's just not quite there. Sigh.

That's all. It's like that chocolate shell on the candy and you're like come on, break on through, crunch up, move on, get to the insides and get it DONE. I'm also not yet trying to clean, and cleaning is my big clue I feel better. I could try it and see what would happen, but it feels like it would feel swirly. Cleaning is moving around, lots of movements and decisions. I can shop now, haha. That I can do. 

The studies I'm seeing on HBOT for mTBI from blows is 40 sessions, sometimes 60. Sigh. On the plus side, it has been really good. Like some aspects of my health and just my being and mental clarity are SO much better than they've been in a long, long time. The arthritis in my back is better and I have more movement in my back and neck. And ds is being compelled to take on some things he was ready to do independently, like rising with an alarm. So that has been good and we're just milking it. I think next week I'm going to start him on some independent school work (1-3 tasks on a list) and see what happens. I think it could work.

Oh, and did I mention this HBOT gig is a whole occupation? Like a long drive, a long session, then maybe a lunch or shopping or time to recover, then the long drive back. It's taking up the better chunk of my day!

So that's all. I'm just skunked because I had really hoped I'd be done by next Tuesday, and I'm not feeling it. If the trajectory could have stayed consistent, I would have been. Now I'm not. My head hurts at the spots where it got hit and has diffuse pain in other places. I'm just not done, sigh. And I don't know when it will end.

That's all. 

Edited April 10, 2021 by PeterPan

[Katy]

I’m sorry. I’ve had a low level headache for a few days too. Is it possible yours isn’t from the head injuries but instead you’ve healed enough that your body is reacting to the same seasonal issues most of us have?  Weather changes, mold spores, pollen, eating extra histamines in the form of Easter Ham & wheaty treats?

Even my youngest has been acting sick the last 2 days... we were starting to consider a doctor appointment but gave her a 1/2 dose of children’s Benadryl and she perked right up.

I’ve had multiple concussions too, but only one of them was severe enough to cause long term symptoms.  Please don’t take offense if this is way off base. I always hated when people gave me advice. It was always about caffeine, food, or essential oils. 🤕

[kbutton]

Do you have a trusted chiropractor someone that does cranial sacral stuff? Those would be things I'd try if I had trusted practitioners or excellent references.

I am sorry it's not all the way better. 

[Spryte]

I’m so sorry it’s not better.  Is there any chance that the recovery with HBOT can plateau and then continue again?  
 

Headaches are miserable.  Take good care of yourself.

And ... No cleaning, yet!  (Had to laugh, that’s my sign too - I just overdid it today, the first day I’ve felt better in forever.  Oops.  Don’t do that!)

[kristin0713]

I'm sorry you're in pain 🙁

[Garga]

I’m so sorry you’re going through this. So many head injuries. 😞

[Starr]

You've improved so much. I'm so sorry that last chunk is taking so long. 

[PeterPan]

2 hours ago, Katy said:

seasonal issues

Oh yeah it's definitely ramping up as the trees have come into bloom. I've been taking a med at night to make sure my lungs and sinuses are good and clear when I go in the next day. Then when I come out I take glutathione (to slurp up the oxidative whatevers) and it just undoes the allergy med. So I'm definitely doing this. I'm not sure the loratadine I'm taking now is as strong as the zyrtec generic I had been taking, but it doesn't give me the headache side effects. So you're right too that if it's under treating the spring allergies that could be part of it.

Whoa, google is saying possibly 20mg (2 pills) max dose instead of 10mg. Know anything about this?

2 hours ago, Katy said:

essential oils

Is there something that would help? Hahaha. I have the Motion Eaze from cruising. Maybe I could put that on my ears and feel great, lol. It was lavendar, I don't know what all, just very peaceful.

2 hours ago, Katy said:

caffeine

Yeah, I've been laying off. I had some tea today because we went to see my dad. But just in general, I've been completely laying off because it does something (I don't remember what) to the blood vessels and is supposed to make it worse.

2 hours ago, kbutton said:

a trusted chiropractor

I can go back. You're right maybe my neck is off. The HBOT loosens up so much. I had gone each week for a while because my neck was all gumby and then it got tight. He was out for a week over Easter. I can do that this coming week. You might be onto something there. I definitely get headaches if my neck is off. I just bought a new pillow to change out my old, so I could get that in place and see if it helps.

1 hour ago, Spryte said:

 Is there any chance that the recovery with HBOT can plateau and then continue again?

Hmm, I don't know. It's kinda expensive to go on too long. I need to be able to say I'm making progress, even if it's tiny steps. Like when I started, I was going on the advice of a friend who said she was done in 6-8 sessions. Now I'm in 31, lol. For real. But I was making SO much progress it was like no way am I stopping, kwim? 

1 hour ago, Spryte said:

No cleaning, yet!

I like this advice, lol. You might be right that I was doing too much and need to just rest. I could put my feet up all day tomorrow and watch old movies and rot my brain and see if it makes me feel better. 

1 hour ago, Garga said:

So many head injuries. 😞

Yeah, I don't know what happened. I had an inauspicious first 40 years and then BAM, BOOM after that it got crazy. But yeah, it's definitely the start of a lifestyle change. The clinic has told me no more craziness, that I must protect the head from now on, that it's really not a joke, sigh. I'm looking at everything differently. I hit a point where I was just well enough that I kind of started getting scared looking back and realizing how not well I was. Like I was having trouble writing my name on the sign in sheet each day. I couldn't do manuscript at all, only cursive, and I was missing letters, stilted, awkward. It took a several weeks and then boom I could write my name. Now it looks great, with proper sizing and shape. 

So yeah, definitely going to have to be a bit more safe. 

39 minutes ago, Starr said:

I'm so sorry that last chunk is taking so long. 

I think y'all are right. I'm gonna rest hard tomorrow and see if that helps. 

Edited April 11, 2021 by PeterPan

[prairiewindmomma]

TBIs take time and that’s super frustrating. Hugs!

Edited April 11, 2021 by prairiewindmomma

[PeterPan]

29 minutes ago, prairiewindmomma said:

TBIs take time and that’s super frustrating. Hugs!

Yeah, the more I think about it, the more I think y'all are right that I was pressuring myself. I'm going to give it a week of good hard rest (maybe two) and see what happens. I had forgotten that fatigue and headaches kind of overlap, and my body may just be saying to rest and let it finish. 

Edited April 11, 2021 by PeterPan

[klmama]

So sorry you're still dealing with the concussion recovery and with allergies on top of it.  It's a tough situation to unravel.

FWIW, 10 mg Zyrtec wasn't helping me enough and was also leaving me lethargic and unmotivated, so there was no way I was going to take more.  I tried taking quercetin with bromelain instead; it's supposedly a natural antihistamine that also has antioxidant and anti-inflammatory properties.  It's working a lot better for me than Zyrtec did, and it leaves my brain function intact.  This isn't medical advice, of course, as I have no way to know if it would be right for your unique situation.  Please do your own research, ask a medical professional, etc.    

I hope resting helps you feel better!

[Katy]

Re essential oils...  no most of them gave me a headache. Peppermint essential oil rubbed on a temple does help a little...  but it also irritates some people. It’s tingly. I think my local Walmart carries it, if you want to check if you can get it with grocery pickup. Or you can order from Amazon but beware oils usually don’t ship Prime. 

You could also try a DAO supplement. I buy them from Amazon. It’s an enzyme (in this case extracted from pigs, but it’s the same enzyme we make) that helps you to break down histamine. The package might say it only blocks histamine from being absorbed from high histamine foods, but I suspect that’s because they want to keep it as a supplement & not let it get regulated like a drug because nothing calms my allergies more. 

Zyrtec is definitely stronger than Claritin for me. Benadryl works so much better than either that I take that one at night and deal with the sniffles during the day. I’m ignoring the warnings that it may cause dementia because it’s the only one that works well. 

[DawnM]

I am sorry to hear all the woes you have been through.   I don't really have much to add, I have had allergy and weather change headaches for a couple of weeks now.   I never used to get them in CA, but here I get them often due to weather.   I can't imagine adding that to all you have been through.

[kbutton]

11 hours ago, PeterPan said:

Whoa, google is saying possibly 20mg (2 pills) max dose instead of 10mg. Know anything about this?

Claritin can be taken this way. 

You might try Allegra if you've not tried it. Out of the big three--Claritin, Zyrtec, and Allegra, all of the people in my house respond differently. Zyrtec, for instance, is a great way to make me drag around exhausted but doesn't touch my allergies. Anyway, it's worth trying something new because everyone responds differently.

10 hours ago, Katy said:

Re essential oils...  no most of them gave me a headache. Peppermint essential oil rubbed on a temple does help a little...  but it also irritates some people. It’s tingly. I think my local Walmart carries it, if you want to check if you can get it with grocery pickup. Or you can order from Amazon but beware oils usually don’t ship Prime. 

Yeah, I don't like essential oils for headaches either. I don't do well with anything mint-related on my skin--I am super sensitive, and it burns. Not pleasant. 

[wintermom]

So sorry you're dealing with this. Sounds like you've come a long way, which is wonderful! Do you find this lingering pain radiates from anywhere in particular? Just wondering whether you've had any muscular work done on your neck. With blows to the head, the neck can be affected. You mentioned dealing with back pain, but didn't mention anything about the neck area.

Back in the 90s when I was a life-guard (before head injuries were well studied) the standard of care was, "if there's a head injury, there could be neck/spinal injury." 

Hope you continue to a quick and full recovery.

[Halftime Hope]

Just wishing you well. 

We have a relative with TBI, and it has been a life-altering journey.  She, too, hits a wall where he brain is just "done."  But she's so, so much better!  I don't think she has done HBOT, but I might suggest it to her. 

 

[BeachGal]

I'm glad you posted about your experience using hbot. It'd be great if we studied hbot more in the US and if we had more hbot centers that didn't charge too much.

Gotta figure out how to get rid of those headaches so you can go cruising soon and get your Vitamin Sea.

I hope you feel better soon!

[Harriet Vane]

Holding you in prayer, friend.

[PeterPan]

37 minutes ago, BeachGal said:

I'm glad you posted about your experience using hbot. It'd be great if we studied hbot more in the US and if we had more hbot centers that didn't charge too much.

Gotta figure out how to get rid of those headaches so you can go cruising soon and get your Vitamin Sea.

I hope you feel better soon!

Oh man that's encouragement! I know, it's fun to think about being all the way better and that feeling good. 

I don't know, I think the pricing is probably pretty reasonable for what it is. The equipment is terribly expensive ($100k per chamber at least) and there's a lot of overhead and liability on their part. I'm being supervised by nurse practitioners at all times, so that's a level of expense built in. And they have rental. 

There are plenty of studies on HBOT but the issue is what has had enough data to get insurance coverage. There's a big study being done now across universities trying to determine dosing, etc. for fresh head injuries. So the issue is getting the number of people and that all worked out. It's relatively easy to get coverage for a narrow range of things like wound care. Indiana funded a program for HBOT for vets and totally screwed it up, not getting people serviced. That just made the news. 

The self pay cost is about half what they would bill insurance at, so the self pay cost is, for what it is, reasonable. I'd be scared corners were being cut if I were paying less, kwim?