Do these headaches ever go away?

[ian rd]

When will these headaches ever go away,  sometimes they give me a couple of hours break, I try not to take too many pain killers now as I was told they can give you headaches, plus I'm afraid of addiction, don't know if that could happen. Saw my GP today to ask for another fit note for work, he told me i should be better now! After telling him I cant walk more than 200 yards without feeling exhausted and still have constant headaches,   plus I showed him my letter  for a follow up at the hospital in May he decided to sign me off again.  

 

On another note , does anyone get traces of blood in their saliva, all my doctor said is its not normal. 

[Daffodil]

Ian, I am not surehow long it is post SAH for you but the sensations and head pain does take a while to subside and it’s pretty uncomfortable whilst you are in that state post SAH and discharge. It is different for everyone though but regular meals, rests, water all help , really look at your diet and maybe keep a headache diary and see when it goes up and down and not trying to shoehorn yourself back into everything at the pace you did things previously.

 

an interesting fact is the brain itself doesn’t register pain but I speculate our headaches post SAH are a traffic light indicator for us that it’s healing. Imagine your brain right now as the most painful twisted ankle you’ve ever seen, and you might hobble slowly but you’d give it plenty of time to rest until that visible bruising went. Well maybe the headaches are a way of showing we have had injury to our brains so my best advice is to slow things down. Find ways to be still and really calm yourself a2a6 from any cognitive stimulation. Hopefully you will notice the scale of the headaches moves with that change of pace. . 

 

The Pain Team at my treating hospital did talk to me before discharge about the benefit of using prescribed pain killers properly so that you can get in front of the pain and not let it peak and trough and I understand your worry and reluctance to maybe take them often but equally sometimes we need to accept this is a helping hand too. Smoothing so that you can heal. But If you are taking them at high levels for months on end and to no effect  then ask to be referred to a pain clinic 

 

re blood suggest you see a dentist although I used to regularly think I could taste blood in my mouth the year post my event but there was no trace of it. It scared me but I used to count to 10 slowly and often it would just go. Glad you got a fit note, are your work supportive? 

 

Take care. Go easy 

[Macca]

Ian,

 

1) Make sure you are hydrated first of all,  it is well known that fluids help keep headaches at bay to some degree.

2) Go and see your dentist re blood in the saliva,

3) If you get no joy there, go back to hospital and get yourself checked again.

 

I find it amazing that your doctor just says he thinks you should be fit by now and it is unusual and just leaves it there without recommending a course of action.  Time for you to take positive action.  Sounds like he knows little if anything about SAH, so go to the people who know - and they're at the hospital!

 

Good luck and please let us know how you get on.  Don't be embarrassed or shy, it's what they are there for and you will be forever wondering 'what if?' if you don't go, so be positive and go and get yourself sorted!

[Susan]

Hi Ian

 

Not sure what to say on the headaches (other than the usual advice to stay hydrated and not overdo things) as I was lucky enough to be able to manage mine with just the occasional paracetamol. You are only 2 months out from your NASAH - I am sure there are other members on this site who were still having to take regular pain relief for headaches at that stage - hopefully they will chip in with their own experience of using pain relief. I think pain relief is something you should be talking over with your GP, and as Daff said maybe getting a referral to a pain clinic if needed if pain persists longer term.

 

Try not to be too concerned over your GP's comments over the fit note (though maybe think about trying out a new GP!) We all recover at different rates and many GPs will have no idea how long recovery can take. Although she never said it I got the feeling my GP had no knowledge whatsoever regarding SAH - she listened when I talked about my symptoms but made no real comment. She was happy enough to sign my fit notes though.

 

I saw my neurosurgeon at 2 months and remember telling him I felt like I was permanently  a bit drunk or hungover - and I remember him being surprised that I wasn't feeling better than I was - I guess because I seemed to be doing very well whilst in hospital. He was at least sympathetic and said he would recommend to my GP that I take at least another 6 weeks off work (I think by the time she received his letter she'd already signed me off anyway!) In the end I took 5 and a half months off before returning to work (and then I only lasted 3 weeks before needing another 6 weeks off!) To be honest YOU are the only person who can judge when a return to work is possible.

 

I also tasted blood in my mouth sometimes but I do occasionally get bleeding gums so I did not worry too much about it. I think in the early months we all become over-aware of every sensation from the neck up.

 

I do hope you start to feel better soon. X

 

[frmertd]

My experience as a doctor is that GP's don't have much experience with us. They think, "well it stopped bleeding so it is resolved now." They don't realize there was some brain damage from the bleed causing residual symptoms. You should not be better by now and any symptom you have , you have!!! I would love to talk to your doctor and give her a piece of my mind! Ask your gp how many young people with hemmorrhagic stroke does she have in her practice and she will say 2 or 3 tops or none at all.

 

Some docs get cynical (myself included) and if you are dealing with something you haven't seen much of (ie:young person with SAH) it is easy to put yourself in cynical mode, rather than to jump on a computer and take the time to learn about it. This is where a specialist would immediately understand your symptoms. I understand in socialized medicine, they make it extremely hard to see a specialist. So you are stuck with your gp now who has minimal (to none) experience with your condition.

[Chelle C]

I have to say that my GP was brilliant when I had my SAH, the practice had never had a patient who'd had SAH, when I came out of hospital they made a point of visiting me at home, they also made a point of reading up on SAH so that they knew exactly what they were dealing with, the partner that I was seen by, openly admitted that she had read up on the subject for that very reason.

 

I think some doctor's just fumble there way through without really having much idea, it's the situation where you look ok, so you must be ok, an assumption a lot of people make, that of course doesn't help when you are suffering.

 

As Macca said, you need to speak to the people who know about your condition.

 

I wish you well and hope since you last posted you have managed to get some help.

 

Take care

Love 

Michelle xx 

[Skippy]

4 hours ago, frmertd said:

My experience as a doctor is that GP's don't have much experience with us.

Totally agree.  My GP back then told me that my anni was 2cm - wrong! The clot around it was 2cm the anni was 2mm.  To this day they do not have another SAH patient.  Every time I go to the GPs about anything they make a comment about the SAH and admit that they don't really know much about it.  One of them even asked if they could call me if they had another patient!!!  I did point them in the direction of this site - more knowledge and experience on here than anywhere else!!

[Catwoman23]

I had been graduated from school since 2000 or 2001 and I have been with this practice for about 12 years. And we are a big practice with 25000 plus patients. I have one patient with SAH. I have another lady who had SAH after a motorcycle accident but she has no symptoms afterwards. I have very few with AVMs and brain bleed. 

Seen a lady having acute SAH as a med student in Ireland. She was in so much pain and now I m not sure if they should be giving her more pain meds or sedation? 

So I would say many primary care won’t know about this because it s rare. I doubt that many neuro has seen this.

 

I will be honest and say that I missed something a few years back on a young ehler danlos patient. She is in her 30s and was having chest pain. I thought it was just muscle pain as usual but it was an aneurysm. Common in Eds patients. I felt sorry and apologized. They are just watching it now and she s still my patient and just saw her recently. It is hard when you see a young healthy person in front of you. 

 

My other question is can SAH pt go on blood thinners if they need to. Can they stay on aspirin? Etc Do they need to avoid any meds etc etc. I ll find time to read up when I m not swamped with patients and paperwork.

happy birthday frmertd on Saturday.  Many healthy returns.

 

[Krislwal]

My GP said my NASAH was genetics while my neuro says fluke.  Both agree that there's a small percentage of reoccurrence. My Rheumatologist said it's not related to my Rhumatoid Arthritis and my Hemotologist says he sees brain bleeds all the time.  In fact my neurologist said the same thing.  My acupuncturist says it's from the long time meds that I was on in the past for my RA and anxiety and my new doctor, my naturopath says it's from all the above, meds, autoimmune disease, exposure to radiation, etc.  so really who do you believe?!

[Eric270]

Hey Ian, I hope this finds you well.  I am a little more than a year since my episode and I still get headaches.

 

 I have days where they are minimal and I think I'm over the hump and then days where is all I can do just to sit up but,  the bad days are slowly becoming less and less frequent,  you just have to learn to take it one day at a time (easier said than done,  I know. I'm still trying to learn this).

 

 There are some pain meds that are non addictive you just habe to let your doctor know that that is a requirement.  I used to have a problem with drugs ( 16 years clean now) and I still worry about a relapse. I explained everything to my doctor in great detail and they were able to find me something that worked (I won't list specific medications on here because I'm not 100% sure of the rules but,  they are out there). 

 

As everyone else said,  stay hydrated and pay attention to what you are eating.  I think changing my diet has helped tremendously.  I have also found that keeping a journal has helped alleviate some of the anxiety and frustrations which on turn has helped lessen the headaches. 

I hope some of this helps and finds you in good spirits. 

 

Eric