Need Help

[marycharisa]

Hi Everyone,

I had a SAH on May22nd, it was diffuse but I m blessed to have no severe lasting neuro deficits. I was a very active person, typical type A. I am an Pediatric Emergency Nurse, and just was at a new job for only 2 weeks when this occurred. I spent 2 weeks in the ICU and have been home for almost 1 month. My question is this... my headaches seem to be getting worse some days, with neck pain and muscle spasms. I feel hopeless sometimes especially when the pain gets horrible. If I could just take advil/motrin, but cannot any more. I take neurontin 300mg every night, and fiorcet as needed for headaches. Does anyone else get migraines? Did any one else experience the headaches and neck pains getting worse. I have been sleeping, drinking 3 liters of water a day, and walking. I am at the end of my rope with this pain. I feel so overwhelmed, I cannot even put my head on the pillow as my neck will spasm up. I went to physical therapy,,,but that was a waste of time.

[MaryB]

I am sorry this happen to you. Most of us have headaches it seems. I often get that stiff neck, nausa headache if I over do it. I also have Fibro so that type of headache was something I was use to. I also just stopped having bad headaches a month or so ago. I had my SAH in Sept,2011 and a few other things going on. I can only say water and rest. It takes time, most do not return back to work for at least 3 months. I sometimes can only be up right for a few hours at a time. I do not know if you are allowed to get a massage or not?? May be something to check into? I also use epson salt soaked washcloths and put it on my sore areas. I had aa hard time finding something soft enough to lay my head on for several months. Do you rest several times a day? Let us knwo what your day is like, and you will get some respones. Most live in UK or Canada so they are not up this late. Tomorrow you should have more people give you information. I wish you well. Maryb

[marycharisa]

Thank you Mary B. I am really loosing it with this pain. I am supposed to be back to work in 2 weeks, I hope I feel better soon. I have 3 kids, the youngest is 5, so I do not rest too much. I also have 13 and 16 year old girls. I am just at the end of my rope. when even lying down is painful.....I may go for a massage soon.

[MaryB]

What is your Dr. Saying? I would think with muscle spasm ( as I have them in my back right now) you need an anti- inflammatory medication or cortisone? Something to setttle it down. Good luck.

[Louise]

Hi there

I'd go get it checked out hun no point in suffering.

[Winb143]

Tell Doc all that you have said and as Louise said go and see Doctor...ask him if its okay...dont rush back or you might do more harm than good....just get help first and Good luck

I only take paracetamols for headache......too many other pills I pop ..on Docs advice ....

Be Well

WinB143 x

[Carl]

I had headaches for a long time. I still get them now and then. I tried all the pain pills and honestly they didnt help much.

The doc put me on propanolol and that has seemed to help. It has lowered my BP too the only down thing is the fact they make me tired.

If there is one piece of advice I would give anyone who has had a SAH that is stay off work as long as you can stand it. I find work most fatiguing. I prefer the choice of setting my own pace. Retirement sounds sooo tempting right now. Like a Siren calling me from afar

I think the massage sounds like a wonderful idea too. You need to pamper yourself and be an advocate for yourself. Oh yeah we will root for you too.

Welcome to our sanctuary.

[Teechur]

I don't mean to harsh your mellow, and everyone is different but I'm over six months post SAH and I have had a headache every single day since Spidey-Fest (my special name for that special day).Nothing seems to help. I'm a teacher and I went back to work way too soon. Love my kids, they're the greatest (high school nerds, mostly boys), but they just sucked the energy out of me). I agree with Carl, I wish someone had given me "permission" to stay out of work longer but my doctor on releasing me said "Do you want to go back to work Monday?" so I thought that meant I was good to go back to work Monday! I ended up going back a week and a half later (because after one day I realized there was NO going back to work Monday and called her crying). Then saw another neurologist who had me take another two weeks off and half time for two more weeks, and I still didn't make it through a full week. Thank GOD I have amazing staff mates who donated sick leave.

I have told my doctor about my headaches. Initial reaction was "They'll be gone in 4-6 weeks." Then it was "They should be gone by now, so I'm sure they'll be gone soon and I'd rather you didn't take anything." Okay cool. You're not the one trying to think around this giant ball of pain every day. Finally I got Topamax and was told it would take a month to kick in. It's been 6 weeks and it isn't doing anything for me. I have another appointment on Friday and will PRAY that he has something else for me to try. I'm on summer break right now so at least I can take each day at my own pace, but it hasn't diminished the headaches any. I did have two good days this week, but today I'm sitting around a level 6/7 all day. Prior to Sunday and Monday I had 8 days in a row where I didn't fall below a 6 and a few days where I considered going into the ER just hoping they'd give me something so I could have 3 or 4 hours without pain.

Like you, super duper active, Type A, teacher, run my own coaching and personal training business. I'm an ultra marathoner so I have a SUPER high tolerance for pain. (Trust me, you run 50 miles without stopping, you learn to live with pain.) So just putting it into the context of "I'm not a whiner and I'm doing everything to fight succumbing to being 'that person' who is defined by her affliction." (Not that I'd say that of anyone here.)

I have a friend who had her SAH just over one year ago, younger than me, an ultra marathoner, on her honeymoon, about the same size (both of ours were pretty small, good outcome expected), and she still gets daily headaches although they have diminished in intensity. She's back to running marathons. I have been able to walk a half marathon (two weeks ago) and have walked a 5k and am going to try run/walk a 5k tomorrow. I have been walking about 20 miles a week lately, so it feels good to be getting back into a fitness routine. It is discouraging that she's still dealing with headaches, but at least she's back doing what her and I both love to do...running.

[marycharisa]

Thank you all for you thoughtful replies. I woke up this am and felt like I had a massive hangover. All the pain without any fun! (cannot even imagine a drink yet). I made it until 3pm then had to take fiorcet. The headache and neck pain were around an 8. I wanted to call the MD but did not want to go to the ER so I will see him tomorrow. The neck spasms are so hard to correct, as soon as my neck hits the pillow I feel like someone is putting my neck in a rock hard grip. I am doing neck excercises, heat and cold. Does anyone have any clue what the muscle spasms are from and what to do? Sometimes the pain gets depressing. I just "keep swimming".

[MaryB]

Mary, I am not an expert but the spasms seem odd compared to what I had - My headaches left at 6 months - never spasm kind but they came back at like 7 1/2 months much milder. I am having back spasms so I REALLy get that spasm word right now. I just had one shortly ago that went from my back to my stomach, don;t even know where to grab to make that stop!!! I do have a Corona theory if I drink 4 my head feels better. LOL

[kpaggett]

Well, I had massive neck pain and it even radiated all the way down my arm. Then the back pain started after I got up and going more, then it was my legs/hips/knees because I overdid my exercising. I still deal with this daily, but it has gotten way better. Now, the neck pain is mostly gone and sometimes the other pains are gone unless I over do it. I think I suffered less from head-aches because I took it WAY easy. I didn't go back to work and still don't work, I took frequent naps even if I didn't actually sleep and really practiced a mindful way of being in this world. I WAS a type-A. Thank-goodness I was able to make the switch. I meditate daily, do yoga, and take no meds. I hated meds as they always seemed to have side effects some of which doctors were so completely unaware of (pharmacists were way better at knowing this in my experience). It was sometimes extremely hard to go without pain killers, but because I felt drunk all the time, I couldn't imagine wanting to take anything on top of that feeling. I have gotten used to the pain, and as I said, there are times when it all abates. It has taken way more time than I ever imagined or that the doctors even had a clue about. However, I do see progress still...and it has been nearly a year for me.

I hope you find the answers you are seeking. Some of them never come and you have to learn to live your life in spite of uncertainty. It took me FOREVER to learn to look beyond my conventional idea of what 'Should' work and find my true destiny for healing...it is out there for you too, it just might not be where you expect it...be open.

Take care!

~Kris