STILL with the headaches!

[Teechur]

One year and one month and I'm still dealing with headaches and am so tired of it! I feel like I've tried everything legal. I was just put on another medication today; a beta-blocker to lower blood pressure, although I do already have low BP. It may or may not work because at this point we're all guessing. Is this an SAH problem or have I awoken migraines due to the SAH? I've had CT scans, MRIs, MRAs, Angiograms, and sonograms of my major blood vessels.

I do have a secondary finding of Fibromuscular Dysplasia, but that isn't what is causing the pain because it's minor and I have great blood flow.

Inside I look as healthy as a 20 year old; brain has no blemishes, all of my blood vessels are completely clear of plaque, my flow is only impacted in one small spot in the carotids, but that's compared to the rest of my body and when compared to the average 47 year old is normal. My blood pressure is low, I have a resting heartrate of about 45 (was 40, but I'm not as fit as I was pre-SAH).

I've tried Topomax, Verapamil, and am still on Amitryptiline and now Proponolol (that just looks like it's laughing out loud at me). Next step is Botox. At this point, shoot with neurotoxins or elephant tranquilizers!

I am very thankful to have most of my energy back and am back running. I did finish my first full marathon a week ago Sunday in less time than I expected, and feeling pretty good! I teach my bootcamp and running classes, and have added a weight loss class to the mix. It's just that I do this with the understanding for all involved that on any day I may have to call off and spend the day in bed wearing sunglasses. I have headaches all day every day that are light, and one to three headaches a week that are serious. Sunday we had tickets to see the play "War Horse" but I couldn't go. When my head is bad I can't handle bright lights or loud noises. Even now I'm home because I had a doctor's appointment, and am dealing with a nasty level 7 headache.

Ideas? Anyone else deal with this? Any ideas? Any ideas about relieving the pain without pills (since I can't take pills during the day when I'm teaching and OTC pain medications don't help)?

I feel like a broken record every day. My husband no longer asks me if I have a headache, just "How's your head?" because he knows that the answer is always "Yes, I have a headache."

(A side effect is that my house is now infested with dogs. We took in two rescue dogs over the summer/fall because apparently I have lost the power to say "no" when someone presents a needy pet to me. I am now not allowed to even look at dogs because we have five...and I loves them all!)

I worry sometimes about that statistic that only 15% of people completely recover with no impact on their life. I just assumed I'd be one of the 15% (because I'm 'special'). <said with tongue firmly in cheek>

[amexdm]

Hello Teechur,

You know full well my battles with the headaches. I hope you find something. the little stuff doesnt work for me. Amytryptiline helped but did not make them go away. I am on a new extended release pill that lessens the headaches but does not make them go away. I'm not sure how I like this becasuse then it's 24/7 headache

It's funny, my wife says every day, "How's your head". She just knows it hurts becasue she lives with me and can see the look on my face (or the back of my head on pillow).

I too have tried most thingsand get rather aggravated when people tell me to take OTC cause OTC takes the 8 headache to a 7. Woo hoo.

I think we're all going to have headaches from one point to another it's just the severity and frequency.

Send some dogs my way. I need a therapy dog, but I am too fatigued to get one now (bad for doggie).

I'm sure others have suggestions as well. GG?

Be well and someday headache free

David

[MaryB]

I am loopy from a muscle relaxer as i am stiff and sore as can be. But Michelle saw a specialist and I am very interested and curious what they find out over the next month on her work up. I think she has a 4 1/2 year head ache. Once again I keep reposting my fibro network post on FB to share they have some very good advice on chronic pain and illness. I still feel it all is in that big ball of them not knowing what to do with us as there is not enough research. Except fibro network is doing many studies.

I need to go to bed I walked to the little gross store at the end of block thinking it would wake me up and make me feel energized. Nope, I am worst from the cold.

I only have headaches from over doing my thinking, like on the days I work. I come home and can't function at all, so sorry no help. All I can do is rest and hold a pillow over my face. Right now I am in pain from head to toes and I am thinking about taking a major pain reliever although my mouth will break out bad from it, right now it is worth it.

I started therapy a month ago and even though I answer all my own questions it is soooo wonderful. I thought I would not need it but I do. My processing goes right out the window at the first sign of fatigue, I feel so dumb I cannot spell or even sound out a word. Sometimes SURI does not even understand me. SO I think for my lack processing is my first sign I am going down hill, next comes the headache. I was thinking today as I was putting the dishes away how much I really HATE that sound, I leave to go upstairs when my husband does them in the evening.

Very hard to believe I had an hour and half massage yesterday!

And that word game is like playing a game in Chinese to me! Crappola on that! I cannot even begin to process it, just like Michelle we think that part of our brain is not working at all!! Interesting we are completely blank when we see those words. Wonder what that is? I will have to ask my sister in law why we cannot “get it”. Once about every 6 week I am amazing though! Saturday after hours I handled an emergency really well.

Edited February 28, 2013 by MaryB

[Daffodil]

So I know its not good to promote Products on here so i wont name check but I stopped taking all meds for headaches and now don't take a strong prescription tablet unless I have a real doozy of one.

When I have a regular SAH rubbish head I rub a teeny amount of a Natural anti inflammatory pain relief balm into my neck and 9 times out of 10 it eases it for me so I can function and get on with my day.

[Teechur]

Thanks for the support. I know I don't always post on this group, but I read quite often.

Today is worse than yesterday so I'm in bed. Part of it is definitely new environment. I had interviews for next year's students and that meant meeting a lot of new people, so I think that's part of it. The weather has changed daily here too. If it will just choose a weather pattern and STAY THERE I will get some relief.

Going off all my meds is not an option. I teach full time and am a personal trainer, so it's a HUGE blessing that I'm able to do that. However, that means I can't play around with seeing what happens if I go off meds. I am titrating down from one medication right now and trying another. It'll be the fourth or fifth headache medication that I've tried. I'm still on Amitryptiline, and then Verapamil was added to that. Now I'm titrating off Verapamil and will try Propanolol. If within a few weeks that doesn't help, then we're trying Botox injections.

I guess we'll see where that takes me!

[kpaggett]

I feel your pain as I read this thread.

Some of the serious pain meds can actually cause rebound headaches and you HAVE to be willing to try different approaches until you find what works. This might mean taking a time off to back off of everything and then see what is baseline. Our definition of 'I HAVE to do something' is way overused and unfounded in some cases. Redefine what works in your life now. It may be completely different from what you were doing before SAH, but it will change your life for the better, I know because I've done it. I am no longer working with either neurons or autistic kids as both would be not right. I am a totally different person. I used to pride myself on my brain power and had stamina like you wouldn't believe (I did neuro-microsurgery, and stayed with my project for 12 hours tied to a cage with a wire so my electrical field wouldn't interfere with the physiological readings-no food). This is in no way me now...and it never will be again. It was hard for me to accept it, but I do now.

All this being said, since I don't get headaches...I don't know what I am talking about...I only know what I hear from you guys as you write here. Please don't take my comments to be judgmental, but just another avenue of discovery that you may or may not want to try.

For me, I think meditation and yoga have helped me in more ways that I ever thought possible. I too wanted to be in that 15%...I might still get there. Our bodies decide, not us. Acceptance.

~Kris

[Wem]

I concur with Daff and Kris' view on this.

Certainly one size does not fit all, I believe most of us face life style choices in our recoveries. The general pattern appears to be the slower the pace the fewer and less severe the headaches and any other associated symptons. Though the trade off is of course a very different life to the ones we were used to.

I suffered rebound headaches in the early months after taking paracetamols and sometimes codeine on an almost daily basis. My GP persuaded me to stop all pain relief, it took quite a leap of faith but whilst my headaches have not stopped completely they are more manageable.

I use alternative methods now for any bad head days, and I have found cooling strips work the best. For me though prevention has been the best method and I have opted for a quiet slow approach to recovery. It is not without it's frustrations, I was a self confessed work alcholic with a very active socail life, no more though - for now.

I appreciate that approach would not work for everyone and I sincerely hope you find the right balance for you with as little pain as possible.

Wem

[Wem]

Forgive the typos in this...........I did of course mean workaholic!

Just another ongoing problem I face, when the brain is tired I appear to suffer from dyslexia, and that is from someone who was an A star language student.

Hey ho,

Wem

[amexdm]

Wem,

What I read was you said you were a working alcoholic with an active social life! Joke! Thats what I used to be. Now I'm just a workaholic with no social life and no alcohol. So fun am I. We knew what you meant Wem.

my little brain forgot to mention that lately occasionally I get a head pain of TEN and it scares the days out of me. It last for about 30 seconds and feels sort of like SAH. I get that "here we go again" feeling and think should I go to ER or what. But it usually goes away. think its a medication change or stress.

Sitting here with an 8 headache at 9am at work is not making me feel hopeful. But last time I tried to wean off the pain meds my BP shot up to 240/170 and I almost died. Headaches can cause high BP which can cause stroke. So it's nothing to play around with.

Teech- I sometimes feel like we are athletes that have to take a pain shot to play. There are some athletes that are in so much pain and they take injections so they can play in the game. That is their job. Their livelihood. It's not pretty but sometimes a matter of survival. So consider us highly functional athletes Teech!

You are doing great with the fitness, I cant walk to the corner due to fatigue. Maybe Botox will work. My neurosurgeon said steroids would help but he "wouldnt recommend it". I'll go with brain surgeon on this one.

Thanks for the update and feedback from all.

Back to the game,

David

[Winb143]

Wem,

Sorry Wem but your mistake made me really laugh, you cheered me up no end.

No headache here Yet !!

Keith n Teech may BP and headaches subside xx

Be Well one and All xx may your heads get better xx xx

Love

Win

Oops meant David lol

Edited March 12, 2013 by Winb143

[cworden0124]

Headache question for anyone who might be able to help. I have been suffering through a head cold the last week. can't take much because of high BP, so I have to suffer. My sinuses are bugging me, but pain in my face hasn't been bad. What has been bugging me is quick stabbing headaches in the upper left side of my head (my SAH was on the upper left, but I never had a headache with it, so I don't know what a SAH headache feels like). The pain lasts for 10-30 seconds and then goes away. I am not having any other symptoms except my BP is a little higher than I like it (138/93 at last check).

Has anyone else had these types of headaches? I read about "ice pick" headaches and that sounds like what I am having. It's more annoying than anything.

[winter]

I have had constant headaches since the SAH. When I was working, they were MUCH, MUCH worse.

I went through the time with changing medications, etc... until we found something that worked. As we all know, there is no magic bullet that works for everyone or every type headache. It was a real pain in the... HEAD, haha.

I've been on depakote now, for quite some time. I take it twice daily. It has most definitely relieved the severity and frequency of the migraines I was getting. I still get the migraines, depending on activity and stressors, etc... but it is sooooo much better now than before!

I do get those stabbing pains in my head, also, from time to time. I have discussed this with neurologist and have never gotten an answer to those other than, "hmmmmm". So, go figure, right?

I too, think there still needs to be much research done with survivors. It does seem a majority suffer headaches and strange pains (among many other symptoms) that aren't always explained by the docs.

When I do get a migraine, I have fioricet (rx) that I take. Sometimes it helps, sometimes not. Laying down in a darkened room, no noise or irritants of any kind, is what I HAVE to do. I am unable to function when the headaches occur.

I still get "scared" at times when the headaches are severe and/or I have other weird feelings and symptoms that pop up. 3 years on and you'd think those scary bits would go away.

[SarahLou]

Hi,

I've also had headaches / temple pressure every day since my SAH two and a half years ago.

I've forgotten what it's like to not have a headache.

They have eased off over recent months, now mostly bad when I'm tired, stressed etc.

I'm very limited on what medication I can take so mainly ride through the pain, take paracetamol if I need to.

I get those nasty lil head stabbing pains too, stops me in my tracks and takes my breath away. I also still get a general aching feeling where my surgery was if I've done too much, my brains way of reminding me it has been injured and that I need to rest!

The only thing that helps me when my head pains are really bad is a totally quiet, darkened room.

Take care,

SarahLou Xx

[goldfish.girl]

Hi Teechur, I'm sorry I didn't see this thread before, I only spotted it this morning because someone posted a few hours ago. I notice my name was mentioned as a long-term 'head banger'

I saw a rehab consultant a few weeks ago about the headache/pain & fatigue. Unfortunately I went alone & as always, I can't remember all that was said. I'm seeing the nuero psychologist tomorrow who was going to speak to the rehab dr & hopefully explain it to me again. If anything helpful comes out of this I will let you know.

Apart from prescription pain killers (which can lessen the pain but don't always take it away) I tried a heated bean bag on my head with an eye mask on which surprised me by how well it worked! It's not always an option though - we all have busy lives & things to do, so laying down with the beany & the eye mask isn't always possible!!

Will post tomorrow if I have any encouraging news. Please check in the Green Room as I may forget to post on this thread.

Michelle x

[kpaggett]

I can vouch for the bean bag on the eyes. I love the quietness it provides.

~Kris

[ADTARIQ]

I still get headaches but I try to roll with it. I am still taking neurontin but in small doses to wean off of it. Sometimes it gets me down a little, but I remember how it could be so worse. I also know that I get mentally fatigued more easily than before so I try to recognize that and prevent it from happening.

[Teechur]

I try to roll with it too, but there are times it puts me in bed. I take Amitryptiline but I don't think it is helping. I think the next thing my neurologist is going to try is Botox. I went to the ER last week, it hurt so bad. Can't roll with those headaches.

Drives me crazy that none of the doctors I've seen have acknowledged that my headaches are very serious or related to the SAH, yet I have a friend who had hers 6 months before me, both of us share the same types of headaches with the same triggers. I think it was my last appointment where finally the doctor said "So you get headaches daily?"

"Yes, I have maybe an hour or two of relief once or twice a week, but otherwise it's all day, every day."

"And bad headaches three times a week?"

"Yes. At least one day a week, but usually 3 days."

Really? I have been telling you this for a year and you're just NOW figuring it out? I think it's because I moved to another doctor (who said all of my problems were from running and I needed to stop--besides, I was GETTING TOO OLD TO RUN). I think he understood that I was seeking a second opinion because of the severity of the pain.

Look, I run ultra marathons for fun. There is no small amount of pain involved in that. I am not a pain wimp. I work as a full time teacher and running a fitness business on the side. I'm not some wilting flower taking to my bed with a case of the vapors. I am a healthy, hard working, driven woman and my life is severely impacted by headaches and I am SO OVER IT!

[Teechur]

Oh and thank you for the heated bean bag idea. I've been doing an ice cap, but I wonder if I alternated the two if that would work. I have a fridge and microwave here at work. I can't lay down with the one on my eyes, but I can at least try the bag on my head. (Kids are used to me looking like a fool. Doesn't phase them at all.)

[goldfish.girl]

Hi Teechur,

Don't feel like you have to explain yourself or your high pain threshold to others. There is nothing about being a pain whimp or going to bed with an attack of the vapours about this.I can only compare it to giving birth with no pain relief, rather than running a marathon. A high pain threshold is high regardless of the situation. For a small percentage of people the pain does not resolve itself. Having had a full blown SAH, you/we do know what pain is and what is annoyingly sore rather than debilitating pain as opposed to something you can keep pushing through. No-one is judging your pain stamina. But please remember that for most people this level of pain will not be a long term issue. I know that after a year, it seems more than long term already but for most people it is not expected to continue this way. There is a massive odds on that this will settle for you.

Some days you can 'push through' the pain, some days it's so bad that your words, thoughts, balance & everything else is affected by it. Also the pain medication strong enough to help does not enable a productive day after you have to give in and take it......

Yes, it's very misunderstood by doctors if it doesn't settle but that is often after a 2 year period and you are still early-ish days at one year on. I can't remember if you have already spoken to a neuropsychologist but they are so aware of the pain and fatigue issues long after a normal dr is baffled that you are not fully better.

I have never tried the ice pack on my head but the heated beany, peace & quiet when you can really does seem to help. The ice pack is something I might try in the summer

Michelle

[Teechur]

I normally HATE being cold, but the ice cap helps immensely. I am always cold, especially hands (I have Reynaud's Syndrome) and I noticed that I was always putting my cold fingers on my head whenever it got bad so I decided to spring for the ice cap. It was recommended to me about 8 months ago but I didn't want to spend the $41. So now when I use it at home I put it on and get under a blanket.

I think I'll try the heat tonight too. At work today I got the nurse to give me an ice pack and it made work more bearable. Yes, when days are really bad my balance, thinking, talking, it's all impacted.

LOL and while I may be guilty of Workaholic, I'm pretty sure I'm not an ALCOHOLIC! You guys made me laugh and smile. Thanks!