MaryB

Mrs M, 

I too had a Perimesencephalic SAH almost 6 years ago. I think overdoing it is a big issue. Had it not been for BTG I would not of know that you must be kind to yourself in recovery, not push getting well - as in not past your daily limits, drink lots of water and stay hydrated. I cannot recall what else I learned at the moment but I would say you your body may be telling you that you have over done it. I think you certainly should always follow up with doctor too. 
 

I know if I over do it my head kills me. I need to stop before I get to that point. Sometimes if I am doing computer work, working with people or business stuff I need to concentrate on I may only last 1 to 3 or 4 at the most. We all are different. But I do believe you should listen to your body, take it slower and tell your doctor. 

Pain pills also give rebound headaches........how unfair is that?? I really do best with resting.  Good Luck, MaryB

Hi, I have not been on here for a very long time. The scalp pain and tingling went away after awhile- I am almost 6 years post SAH and an unexpected vertebral artery dissection during a routine angiogram. I have had severe eye pain- most of my pain is right sided but my eye became so annoying and painful I felt I could gouge it out.

Later I found out I had a form of trigeminal neuralgia. This was post SAH maybe 1  2/2 years? My surgeon was the one who DX me and I was given a drug Lyrica and within a week was feeling much better. NOT telling you that this is your issue at all.

I am bothered by the cold, cool breeze, air conditioners / a fan blowing on my face etc, being tired, sunlight, ( I have some damage to my vision). I am still bothered but my pain is like a 2-3 not a 8-9 when I was hoping I had a tumor pressing on that nerve and they could just take the tumor out. If it is winter my pain will be worse. 
 

I agree with all Macca wrote above. I did see a 'neuro-opthalmologist' who told me I had lost vision in both eyes but it is not that bad. But it ruled out something that could of been missed. 

Good Luck. I hope it is just a healing process for you. MaryB

Sorry Kel, This is not what you wanted to hear at all. I know it is so unfair on so many levels when they do straight shoot with you. I just do not understand. My surgeon who I love told me on my 3 or 4 month check up that I had a small brain tumor. No one mentioned it prior to that. It really makes me mad that they cannot give you all the facts. I now have all my scans printed and in a file. I had to switch family doctors recently and it is a nightmare of explaining what you have and how you became the way you are bla bla bla. Anyway GOOD LUCK!! Big hugs to you, maryb

Casey R, I  was switched from Ritalin to Adderall months back. I cannot function without it. I can take 2 to 4 a day. Most days 2 of the 5mgs at around 9:30 if I can remember another 5mg at 1:00. It keeps me awake and focused. I swear when I do not take it I literally can walk in circles in my house. I LOVE it, I wish I could focus without it but think I am not able to anymore. I can at least keep some normalcy to my life with it like balancing check book. It took awhile to adjust to dose.

I had LOTS of company this week and took 2 and 2 later at 2:00 one day that we were out and I was able to be like a normal person that day. My day is over about 3:00 now. I make dinner and 3:00 and I am done. But I use my hands in evening most of the times knitting or something now. I have, was diagnosed with cluster headaches but really have trigeminal neuralgia type 2 so I have to be careful of stimulants. I only have coffee in am and no tea or sodas all day. Good luck Mary

I find those drugs are not just for depression they also help pain and other issues. AND I agree with Iola. But I think one of the first doctors we should be set up is a neuropsychologist even if I had to pay it out of my pocket it would of been money best spent.

I cannot express that enough. I wish they did an evaluation on all us ASAP, it only makes sense to have someone that understands us mentally & what our personality type is to help us in recovery.

I also think we would stop thinking neurologist were suppose to be doing the therapist job! Boy once I got that neurologist aren't there to hold our hands and care about our daily coping life got much easier for me!

The therapist is a God send as far as I am concerned and I did not think I was depressed but she DX me with it due to "medical condition".

Good luck, mary

Welcome Leanne,

You already have some great advice offered here but I want to add for me I could easily of cut off the world and lived in my little place too. I had BTG but really had to push hard to not let the darkness and my need to be alone take over. I often do not like talking to people. I do not know why. I also do not cry and I think it has been maybe 5 or more years since I had more than a lump in my throat feeling. I am in therapy and it has been a God send although I do not think I am depressed ( she says I am depressed due to a medical condition but it would be more weird if I weren't) but therapy has really helped me just now be able to move forward with a different path now.

I do not talk to my husband much it is weird. I just find it wears me out. We have our separate rooms for TV watching and since I am sound sensitive it works out great. I love him, he is great and all but I just cannot do all that chatter. I wish I could offer you some words of wisdom but do not shut the world out. You cannot push yourself either but you have to have fresh air and a life. I also have to mention the PTSD which can happen after such an event.

Good Luck Maryb

I had that test done many years ago and I passed it but before SAH like maybe 2008 I was tripping a lot and losing my grip which resulted in 3 black eyes one summer. I do have fibro for about 10 years and seemed to have problems in winter with Raynaud's with my feet turning almost translucent. I started Cymbalta for the fibro and it got much better. This was 2-3 years prior to the SAH and all that followed.

I am now also on similar medications at much higher doses, I also am on a channel blocker since SAH.

Good Luck, Sorry I wish I could help you more. Maryb

Hi & welcome!

I had my SAH 9/16/11 and I started a stabbing eye pain past summer to the point I saw my eye doctor several times and after my last mri in December I was told by Gp, Neurosurgeon and Neurologist it was something else so please continue getting it checked out. I wanted to just gouge my eye out for months, I found covering my eye when I am outside helps- with sunglasses that wrap a bit.

Good luck Mary

Hi John,

I was just passing through and saw your message. I am sorry that this has happened to you. I too seem to have a rough October and had some neuro psychologist testing done and did not fair well on it at all. I was told it was time to apply for disability. I have to say I was rather shocked and upset by the bluntness & truth of it all but really the therapist has been a God send for me. She has really helped me refocus on what I need to be doing. It is a darn shame I could tell people what vaccinations their dogs needed but I could not plan a meal at home.

I have had reduced my hours several times and right now work weekends when no one is there. If you want to pm me for what I have had to do to get my life in order please do so. It has taken a bit to unwind and decompress but finally feel like I am at least starting to have a life again. Well until noon everyday! I cannot seem to balance the taking care of myself as I needed to and having a job both. It was one or another and in the end I agreed my brain was more important.

Take care, Maryb

Same here Dawn. Now with the Trigeminal Neuralgia I seem to have this awful ear ache deep in my ears and noise has hit an all time annoying level. Noise sensitivity is not part of TN but maybe because I am having a episode it makes noise worse. I am back to the early stages with noise almost. Or maybe it makes them even more sensitive. Hum??

Thanks Dawn.

Maryb

I am so very happy my husband has never ever made me feel bad about my limits. There is a stage in your life when I think you just know you cannot do it all. I think medically we have seen and had our share of how lucky we are. I know it is harder for him to do more but at least now I feel I can just now carry my share with working so little hours per week. I think this is "In sickness and in health".

I was never a lazy person and still do not feel I am. I just have to do less. And it is not as important as it use to be to have a perfectly cleaned house. I should say I am a little OCD so this has been big for me to let go......personally the sounds of my husband even emptying the dishwasher breaks my ears, someday when he walks upstairs and I can hear his footsteps it literally throws me over the edge. I wish he just sat in his chair with his I pad.

I have to say that I worked my last 1/2 day today for the week with so many barking dogs I am mentally shot. I am just over the edge and finally now with working less I can wrap my head around having a meal with left overs for days like today. I totally lost cooking and it was difficult to cook, shop, plan a meal etc. The whole thing was just crazy for me and I did not get it. I am working on that now.

But when I work I give myself permission to take the rest of the day off and if I can do something it is a bonus.

I think if you were not lazy prior you won't be lazy now you are the one that over does it constantly! I would let that one go. Therapy has really help a great deal the testing to see my new IQ and where my deficits are. I learned if you are distracted and have no attention span you must rearrange how you do things.

The therapist also has helped me let go of so much stuff that really was nonsense now looking at it. She kind of scares me. But she is right and will call me out on things that "are none of my concern" at work etc. she just draws a nice line for you on getting well first. Now I really for the first time think taking care of my brain is the most important thing I can do for my husband, family and myself.

Maryb

Love this "you don't crash into it - it comes up and stops you". Very good line. I may add I have been a on stimulant for about 10 months and I still crash by noon. If I do not take it I crash 2 hours after I am up in the morning. I hate taking it but literally was very interesting in the beginning how light bulbs were being turned on all of a sudden.

I really look at the fatigue wall as you are just doing too much, I make time at noon no matter what that I am going to rest "before" the wall "STOPS" me. I am missing work and when I go there either I think I can push it like a crazy person again or I am just overwhelmed by noise and commotion

I am always so surprise when I am in some office when it is so quiet- I think I could work in a quiet place but I do not have the attention span to start a new job.

Hi All,

Hope everyone is having some sunshine.

My question is "Does anyone know the medical reason why noise bothers some of us so much?" I am so cringing with it again and I was wondering if it is that the lack of attention span it startles up and distracts us ( and I am very highly distracted) that it bothers us or is it more? I have been doing more home chores but Geeezzz the sound of dishes and pots and pans drives me insane. I cringe just as much as when my husband is putting dishes away. Or barking, and sounds in general have been really bothersome since SAH but do not medically why?

I should say with the trigeminal neuralgia on both sides my ears often feel like I have ear aches which is the new normal but no one is bothered by the noise like from SAH that many of us suffer. What is that from....some wise one answer that for me. Good question for neurologist or neuropsychologist but do not have appointments coming up.

Thanks, maryb

Win, That is wonderful news! You must be feeling so pleased! Good job Winnie!

Maryb

The real interesting question is why do not they not send you home with that book of instructions that we do not get but if we did they should include what my Neuropsychologist said to me recently ( after 2 1/2 years). You must eat healthy, take time to rest your body everyday, and do some form of exercise and have joy in your life. Lucky I had the diet thing already pretty much down! But geez this is such good advice and so simple!

Along with a good reference to a well balance whole food diet without all the additives etc..... I drink a soda and I know it for days! I would love to drink soda or "pop" is what we call it but it makes my nerves ending on fire. I drink ginger ale if my stomach is upset only.

Oh so funny you should ask! I have had fibromyalgia for years and it is so affected by what I eat and how I live my life. I also was recently diagnose with Trigeminal Neuralgia Atypical ( as it shoots nerve pain though both side of my face but mostly right side and right eye). I have been treated for cluster headaches since SAH but about 9 months ago my head pain changed. I asked the neurologist at the last appointment if diet plays a big role in this nerve face pain thing as it does with the fibro ( I had much neuropathy in grip & falling about 15 years into it).

I just assumed that if the nerve ending are on fire or not shooting correctly it only makes sense like a diabetic diet would to a diabetic?? It is all basically you trying to give your body what it needs in areas it may be missing. Nerve pain is nerve pain no matter the cause. She agreed, and even told me about a woman she treats in horrible pain and wrote note to herself to speak to her about diet.

I also had a Vitamin B test result form last summer and asked if I could take vitamin B supplements safely and she said by all accounts knowing that I eat WHOLE foods and have really tried to eat healthy that my levels were low. I also started vitamin D. I cannot take omega's as it causes me to have more allergic reactions to other foods and chemicals ( Go Figure!!) but do eat walnuts, salmon and other foods daily. For me if I took the omegas I would break out in hives if I ate fish, stung by a bee or mosquitos but I can eat the foods and be semi ok.

I am not recommending medical advice but I just figured you are what you eat. I asked a doctor about this before I added the supplements. I also want my eye pain to go away but I was afraid of adding anything more as I am on Cymbalta for years and was added Lyrica to help with the new face pain.

I know if I drink sodas, fats, bakery foods etc I feel so much worse and I think it causes inflammation that causes pain similar to my fibro and although I am not a diabetic I get how closely all of this stuff is related so I am being pro active in my diet more so than ever. I do not want to be on so much medication but also know I cannot risk me gouging out my own eye to stop the pain! I am in a pretty good phase or cured!! But I am being really strict with diet, exercise and supplements per my doctors advice.

Good Luck, MaryB

Hi,

My 2 1/2 years out came with me greatly reducing my hours at work even more. I was told to apply for disability, I was told my damage and the effects from my neuro testing showed I have no attention span or short term memory.

I realized last fall I was literally blacking out on my long days and not knowing what I was doing. I was completely exhausted and it was my own fault for thinking I could power through this. I was actually going backwards. I have never asked if I did permanent harm or not. I was told to slow down, quit my job and take it easy for the rest of my life. Mind you it is not like we can afford that and I may certainly have more damage and age on the some of you. What I found was it took awhile to decompress and get a home routine as I can tell anyone what vaccinations your dog needs but I did not have a proper routine at home as all I did was work and rest.

I have started my routine but no matter what I am needing to rest by noonish. I hate that but I do not care what I am doing I hit the wall at noon or at least by 1:00. I have to make that point everyday to rest. I do not always fall asleep anymore but I need to lay down. Powering through the afternoon does not work and I can honestly say I have much less head aches.

I literally had to write out what people do daily - drink a cup of coffee, read email, do any meal prep for dinner.... I did not have this in my head at all in my life since SAH. Now I still struggle with it and have to make a list ( ok I make several of the same thing!!). But now I can do a daily check list. "Task" may be only cleaning a kitchen drawer but it is a "task".

Working Saturday morning is a kick in the teeth to me......augh... it wears me out and I have to spend most of the weekend recovering from using so much brain energy. I also administer medications to hospital pets and boarders on weekends 3-4 times. I work Monday morning is the final blow. I am back to normal by Wednesday. But I do not care if I go to the doctors or go anywhere I am wiped out like I worked by noon. It takes so much energy but I have to give myself some credit as I am doing more like menu planning ( Gosh, that is a CHORE for my brain), and keeping up on things at home. As well as I am rested enough to add stretching / yoga, brain games and other things that are good for my health! Plus I planked for 30 seconds today!

Lin, Poor girl!

I hate the dentist more than anyone in fact just got back from there an hour ago! But I know many that have had their wisdom teeth out with not one issue! I had a molar out before my SAH and it was a breeze! I was thinking it was going to be awful as I have many root canals and crowns. I also by the way take a muscle relaxer and a pain pill before I go for a cleaning and I am as big of a dentist baby as they come. I would go as far as to say I would rather have a biopsy in my naughty bits without an anaesthetic than go for a cleaning!!!

Good luck! Mary

Good for you Susan, I am glad he was interested in you. I had my second appointment with my 3rd neurologist today. I liked her much better today than last time. I really was ready for a bad appointment.

I have to say I took the bull by the horns this fall as I felt I was back sliding and having some blackout moments in the afternoon at work. I made an appointment with a Neuropsychologist and she order neuro psych testing and I did poorly in some crucial areas of memory and attention. She basically ordered me to stop working and said I was destroying my already damage brain. It was nice to have some one finally be honest with me. After I had my report my GP said I should consider disability, my neurosurgeon said the same and that I need to do helpful non stressful things for my brain- both agreed I had Atypical Trigeminal Neuralgia and needed to see neurologist. So I did not have a 2 1/2 year cluster headaches from SAH or tumor.

I have cut way back on my life style and one thing I learned was neurologist are medical they do not help with the memory part and rehab so to speak. If it does not show up on MRI or whatever imaging they use it is not something they can do something about. The Neuropsychologist is great for that and helping you deal with deficits. But the neurologist I saw today was wonderful for a change. Geez they all should be wonderful, it should not be this hard to get good care. We also talked supplements, and she even drew a picture of my brain and showed me the damaged area and where the bleed, tumor was etc.. I knew that but it was nice for her to take the time.

Anyway good luck to you! Although I do not like my diagnosis I am really happy for having a few! At least I can make a wellness plan and move forward.

Keep going in the right direction and hopefully you will get the help you deserve. Maryb

That is wonderful for you Sue! Keep on and carry on!

Maryb

Welcome Simon, How are you feeling now? Hope you are getting along ok. Maryb

Welcome Stuart! Sorry you had the need to google and find this wonderful place but glad you did. Maryb

Hello, I am sorry you are going through this. I had thought I was suffering from cluster headaches for the past 2 years and apparently my GP, Neurosurgeon and new (3rd) Neurologist all say I have atypical trigeminal neuralgia. My biggest issue was my right eye, I just wanted to scoped it out of my head it hurt so badly. The wind, cold air or me touching it can add a horrible pain. Now it is also my ear - deep inside. My teeth and jaw have been an issue for some time. I am just wondering if maybe you should look it up and ask if this is a possibility? I today found that laying my head on the heating pad help much with my right side of my face. Just a thought??

Good luck, I hope you see a doctor ASAP about this issue. Good luck, Mary

Boy, I am 27 months post SAH so I am in the new reality of "OH this is how it is going to be". I have drastically cut my work hours, I am hoping to be able soon to have a routine at home and maybe have some sort of hobby. Darn it, can't recall what this thread was about. LOL.

My neurosurgeon said to me yesterday that with any sort of brain injury just like the football players in the news right now one does not know how any of the injuries will affect our brain now or in the future. I liked his honestly. I am becoming better at getting that my life style will be drastically changed soon. The Dr. said yesterday that fibro is very similar ( I just had to get that in here!) you cannot predict when you will over do it or undo as everyday your body and brain reacts differently. But even so you must DO everyday, use it or lose it. SO I am at 3 weeks of being home the majority of the week and am finding my place.

My friends are the same ones I have had, I got a sweet letter with the young gal I share my job with who has taken the brunt of hours. I think I really could not of been bothered with people that were not real way before this happened. But I do like I that I can understand a whole new group of people now.

At home now I am just starting to get oh your are tired go rest, or yes you did a lot yesterday so you can take today off from dragging myself through chores. I am not waiting like I had to do with working to be ready to collapse before I can rest. We shall see! I am already planning a big garden this spring!

Hi Emma, Welcome

I drove myself to emergency room and dentist late on a Friday night my first trip to the hospital. I thought it was complications of my tooth being worked on the day before. I was sent home with anti nausea medication and that is what I wanted. I found my self on the bathroom floor at midnight and was vomiting every time I move my head or that bolt of lightening hit it again. I was admitted but released on Sunday afternoon. I was back in the emergency room Monday to just get something for my headache and was rushed to a larger neuro unit miles away. That is where a neurosurgeon found my bleed. SO it is not uncommon. I also think I once read it takes so many hours for a bleed to show up on some scans???

You need to follow advice given, drink plenty of water, eat a healthy diet and stop before your head hurts although at this stage your head still hurts all the time. Think of it healing it takes time to heal it is a slow process that you cannot no matter what hurry along.

We all felt like we left with little information and I would in hind site call my neurosurgeon more often and demand more information. They seem to just want to see where you land with all of this. Personally I have had more luck with my GP and my Neuro Therapist explaining things to me.

Good luck and take it slow. Maryb