Exhaustion and other things

[debbieg]

I just wanted to post this and share with the forum. I am 9 years on from my SAH with no evidence except from lumbar puncture.  Did the 28 days hospital and released to absolutely nothing and have struggled ever since.  Many odd symptoms but this constant exhaustion was seems to be a thread running through many SAH survivors.  I still have to rest for several hours a day and nap for an hour. 

 

My lunch break is about two to three hours. Then by 7pm I've had it again.  I can't even go out for the day as I get tired after a few hours and if I don't sleep I get dizzy and faint.  Anyway for years I felt my body was fighting something rather than just getting over SAH being the whole explanation.  It's taken years, tests by different specialists all coming up negative and I'd just about given up hope and just accepting my situation of what feels like an 80 year old or more. 

 

I'm now 51 and managed to find the right route to go down and have just been diagnosed with Lupus and Sjogrens Syndrome autoimmune conditions (scared and relieved about it). It was sudden very dry constantly runny eyes that got me down the right path.  I'd had a very dry mouth since the SAH and an unquenchable thirst most of the time, sensitivity to light and rash when I go in the sun but no one picked those symptoms up. 

 

I don't know if the SAH sparked everything off and the menopause has exacerbated things but I wanted to put it out there that the exhaustion some may feel may point to another underlying condition which the after effects of SAH has hidden.  I have medication which will helpfully ease the tiredness and a bag of other meds now to take! But I am extremely pleased that I didn't give up when GPs have written me off as a hypochondriac or just put everything down to SAH.  

 

 It is becoming more known that body trauma can kick start autoimmune conditions and if you feel something isn't right don't give up. Hopefully any others who feel like me won't have to search for years to get answers. Just because you have had one rare condition doesn't mean you can't have another. 

[Swishy]

It is a wonderful feeling to have finally have answers to something that is bothering you.  You are young and of course want to be your best.  I hope you find yourself feeling better soon..

Jean

[Tina]

Hi Debbie  

 

Thank you so much for sharing. Your post will help many. So pleased you now have some answers after stuggling for so long and have medication that will hopefully help you cope in the future and feel so much better.

 

Wishing you well, keep in touch and let us know how you are doing xx

 

Take care 

Love Tina xx

 

 

[frmertd]

I am about 3 yrs out and really get that "exhaustion" thing too. I really need to nap each day. It is tough to fit in with work, etc. My exwife didn't understand why I was sleeping. My new girlfriend understands fortunately. Your brain gets into a fog. 

I have started to do the following. First, the brain only uses simple sugars for energy, nothing else. It wont use carbs or fat. 

So what I do is the following: I never ever drink any soda at all. Then, on a day I am doing a long work thing, I bring a 2 liter of mountain dew. It is loaded with sugar and caffeine. Also, because I never drink it until a work day it has more of an effect. 

I work around 3 days a week. 

I had a day a month ago when I was driving a long distance (4 hrs) and I literally stopped and bought a hotel room for a nap. It felt ridiculous paying 60 bucks just for a nap, but I knew if I kept driving , I would wreck. 

The brain sometimes gets in a fog. Oh well. Thanks for your story and I hope you feel better. 

[Catwoman23]

Good to hear that you are doing well frmertd. I m sorry your ex wife does not get it. It is important to have someone who understands you. Try to rest since working in urgent care/ er can be challenging. At least we have control of our schedules and can limit people we see.  

 

Try to limit screen and phone time also and rest.  Try meditation. I m doing one oct 8-17th coming up my first time since 2019 and I have done two home course with zoom oct 2020 and March 2021. It relaxes the brain and we used to have some er doc from South Carolina came up as well as some other docs and nurses.

 

Have a good rest of the week everyone.

 

[V.Mama]

@debbieg you've had such a journey to finally getting some answers.  It sounds like you're finally getting the treatment you need.  I hope you start to feel an improvement soon.  

 

I live with several auto immune conditions, some of which are quite benign, such as vitiligo, but what I've learnt over the years is that being vigilant about keeping a healthy balance in life, getting good quality and regular sleep, regular exercise, and healthy nutrition, plus drinking water, has all helped to keep me on an even keel.  

 

You've had so much to deal with, on top of surviving an SAH and a long hospitalisation.  I hope life is kinder to you.