MaryB

Such an interesting thread. I have had face pain for months now. I even had a crown put on a tooth that did not really bother me. I have face, teeth, jaw, ( also just developed TMJ) & really bad behind the eye pain. It was about to drive me mad. I could not stand my glasses touching my head/face and went in and got new frames and my right eye had gotten slightly worse so new prescription as well. I also have when worn down a almost non stop floater in my eye. My eye Dr. for no real sound reason gave me a cortisone drop for my painful eye to see if it would help. Not sure if it is the drops or the glasses or I just had 3 days without pain. It creeped in yesterday but not nearly as unbearable. Also had a electric shock to my check one day and often get a tingle from the top of nose to my bottom lip in a straight line. There is much talk about your sinuses and allergies etc. eye doctor suggested taking something daily for sinuses but I already do. I read about "face pain" and it lists the main kind of migraines most have, which I found interesting. My GP mentioned Trigeminal Neuralgia. Hoping it is not that and the new glasses will cure my face! Maryb

I agree with all the advice you have been given so far. I too had a perimesencephalic SAH, my surgeon found it in a rare area but as far as they were concerned it stopped bleeding and that was the main thing. Sometimes you just have to let it go. I think it is hard when there are no answers, but I am going with "I am very lucky it was a NASAH". Done and over with. I only had 1 angio, several CT scans & several MRI's. I get checked every year and this year should be my last MRI with and without contrast for a small brain tumor they found. Sometimes there are no answers and I really do settle for just being really, really lucky at this point even with all the daily stuff that is not right with me. It took me awhile to get here but at least a year of not really even comprehending the whole thing. MaryB

shricthism I will pm you that information but it is not a magic cure by all means. I have been on both popular ones in the US. I read Gill's post and link the other day which made perfect sense to me. I am not having a good thinking week and frankly I am going backwards at the moment. Could it be the new computer with windows 8?? LOL. I really do think I am doing too much with working. I cannot process by the middle or end of the day ( this has all gotten worse instead of better for me lately). I need more help, I get a bit confused at times but I also work in a loud busy serious environment where I need my brain cells. As always you need to get this checked by your dr. I cannot say that enough. I see a specialist in Fibro end of Nov. and my Neurosurgeon in December for my MRI. I will revisit this issue with both of them. I am thinking I need to make a therapy appointment and get a new plan. My old plan was to add a life to my work life. I seem to have work skills but not home skills or fun skills- must be using that precious space up with working. That is hard for me to admit. I think I would never get anything done if I did not work as it is the only time I have my routine. I frankly have a difficult time when I am off knowing what I should be doing as I have to save my energy for work and this now has been going on for 16 months or so. It is so difficult at times that I have to make a list but cannot even process making a list. I always write the same thing "dinner, clean kitchen and one other thing". The skills to execute the plan or even the list is what I think or feel have been replaced or used up by working. If I could take my work skills and routine and switch them around I would be happy. I will say I put returning to work as a priority and it was and still is but that in mental health ways is way backwards. MaryB

Hi, I am one of the ones that have been given a stimulant drug. The 2 of us that I know of both had NASAH not a SAH. I do not think people with annies could take them. My personal problem with fatigue is I was first crashing at noon which was ok but when I started to hit the wall 2 hours after I woke up it became a problem with work and life in general. I am not happy with taking them by all means. But my best days are taking them with my pain meds ( I have constant headaches on and off for months at a time). It by sounds wrong to me and I explain it to my doctor that it is like being an addict. Mind you that taking headache meds for more than 3 days in a row also give me rebound headaches. I take a little amount of medication as possible. I was fatigued just prior to my NASAH and one of the things I have really noticed at the 2 year mark is that the more I recover the more I shut down with exhaustion. I just cannot get past that feeling of 50% here with energy. I have to work for insurance so until I can change that - this is what I must do. I have tried many supplement etc for fibro/Me/ CFS and only basically eat whole foods in my diet. I constantly think I am "cured" when I have a good day! I fall for it over and over again. I just thought I would add this to your thread. MaryB PS one of the strangest things when I first started my stimulants was a link in my brain connected and I was able to cook again! It was so cool I kept thinking that would continue to happen with more areas but it has not!

Hello all, I have to say if I was asked this much earlier in my recovery I would have had not much to say other than some vision lost in both eyes. But at my 2 year mark I have much facial pain and my right eye is a little ****** of constant pain. I wake up with it and it gets worse through out the day. I first started with the dentist for the face pain as I knew I needed some work, next I went to eye dr where my right eye is slightly worse than last year so I got new light weight glasses that came in yesterday. My glasses we really bothering my face - like they hurt it so I am hoping this lightweight pair with a stronger prescription does the trick. I also noticed all the lamps and lightening in this house seems to be on my right side so I think I need to work on that too. AS light really bothers me. My GP mentioned "Trigeminal Nerve Pain". I really hope it is not that. The pain is behind my right eye and I could just scoop it out. Or stick my finger in it! My eye dr did give me a cortisone drop to see if it takes down some inflammation but she does not think it is the issue I am dealing with. Just thought she needed to try it and it was cheap. That's me right now with my finger in my eye stopping the constant pain! maryb

Wonderful daff! Well done and continue to share. I love this and it makes my day!

Thank You Daffodil, Very well done and useful. Keep it coming. I need to print this out as a daily reminder! MaryB

I find for myself and from what I have read if I do equal amounts protein and sweets ( fruits) I am ok. But I am amazed that a 1/4 of a sandwich of my almond or natural peanut butter does satify my sweet tooth and hunger.

Must respond! After looking up what a "stone" equals to a pound in the US I am feeling a bit like a smarty pants today! I had gained so much weight the past several years that I was even fibbing about how much I lost so I could skip the fact that the scale read that amount! I have worked really hard on my weight and I have lost nearly 2 stones? Augh, that maths and conversion thing! Or 24 pounds or my denial that I was not that heavy I still say 15 pounds! I still have plenty to lose. But I truly basically eat the same stuff every day. Breakfast is steal oats, hemp milk, cranberries and nuts or a no salt, no sugar peanut butter sandwich on whole wheat bread. I just do not give myself many choices. Not to have choices is great for me as I hate to make any decision at all! Plus I stopped my acid reflux meds and now I cannot eat any fried food without paying for it dearly! I only eat chocolate at work as I do not buy any junk food at home. But at work I can down a bag of candy like it is a race. Maryb

Dawn, I have no advice to offer about your employment but I do understand the feeling of getting better and going backwards? I cannot add more to my work week which my boss recognizes or home chores but at the same time I am just finding it more difficult to add anything like a home life. I am blown away how much I feel like a zombie trying to add a tiny bit more. I mean I have no "Executive Functioning Skills" at home at all. I cannot most days even make a list of what should be done. I have had to go back to 3 things on my days off or 1/2 days. Like 1. Dinner 2. Laundry 3. Pull weeds 30 minutes. That is my baby step 3 things. Just write down 3 things. I absolutely have no routine at home at all and find it difficult to make one. Even a simple one. While at work it all comes naturally. Not that I do not have to ask for help or am forgetful etc. I know I did this backwards but it has left me rather empty inside. When people say make a note it is like I cannot think normal to make a note or a list. I am overwhelmed at times by this as it reminds me of early on when I had 50 posts it notes of the same thing. I wonder if you can reach a point where you just have to stop or back it up or something. Maybe even though the brain is better than it was it is on a new level of overload? It is weird. Maybe you / I are only are going to be 50 %? I do not know wish someone could give me a clue on this one. IS there a second wind coming? Or is this it? Maryb

HI all, read this thread yesterday and I have a bout of headaches again. I wanted to add I also am on that same migrane medication Susan and while I was thinking I was staying ahead of my pain I may of ended up with rebound headaches. I read again about that and if used more than 3 days in a row you can have that happen. I tend to either let the pain get the best of me but while trying to do the "right thing" and take the medication before I had a horrible headache I think I ended up in the rebound thing again. I did not have a headache yesterday after a 3 week bout but we will see how the next few days go. Just letting you all know that is what happens to me. Cannot even say anything postive about a "new" doctor as it gives me a headache! Maryb

Welcome Freckles, I am impressed with how fast you are moving along. Back pain that early on? Cannot recall much about that early on but since you are seeing a PT can you ask them to examine your back in that area? I am in PT right now for a giant knot I cannot work out in my lower back and he has given my some really minor exercises and I report to them twice weekly for massage etc. First you should always ask your doctor. But my PT guy located that knot that I have without any real pushing etc. When I get that tight back around my bra strap area it tightens my chest area too, I have fibro and it is something I use to get more often. I had that area tighten up really bad 2 Sundays ago and had to have a co worker just flat hand massage the area to loosen it up. You are so early on I hestitate to even respond to your pain ...sorry. I do heat and hot epson salt baths a few times a day to get the almost stiff as a board feeling to ease up a bit. But you may be over doing it? Maybe so early on? I use to do yoga but cannot get back in that groove since SAH but the back exercises they gave me to do are so minor it makes yoga a bit strenuous! Good Luck with your recovery. Maryb

It all depends how tired I am at the time. At work I have clients that are hysterical sometimes, loud or fast talker etc… we had hysterical the other day – I helped my co worker for about 60 seconds until we were done and I walked out of the room. Now had this been one of the clients I was in charge of I would have had to suck it up and deal with it and somehow you do but it fills my “limit” cup for the day. I just avoid those people. Really, I cannot handle people that play the victim, are angry at really nonsense, hyper, talk loud, sometimes people that just want to talk in a normal conversation when my limit is full. One thing I really notice is my intolerance for people that have gone through a life altering event and come out the same as they were before. I think all of this teaches us something about being a better person. I find I would rather be with someone that has some depth to them. It is very rude at times but as I have said before I a loud hyper person that tells a story instead of a sentence at work and I have crossed the line by putting my hand on her mouth to "Shhhhhhhh" her. Note I work with barking dogs, phones ringing, intercom paging someone, people talking. By noon I think everyone is shouting. I like silence, I watch TV without a bunch of loud talkers ( talk shows arguing etc.), Both my sons are pretty quite guys but even when they come up and visit it is exahusting trying to have a conversation for 8 hours or so while visiting. I sometimes think it is where I am at that day but also their personality. Like I would never invite my one friend to go shopping for a day. Many reasons but she likes to talk, have lunch, browse, dilly dally around. If it were like 2 hours ok but not those all day things unless I was really prepared for them. I also think it is a way to sort of meditate without you realizing you are doing it just by needing or being quite. It is saving your brain from having to process all that stuff. I think shutting down is a life saver right now. Maryb

Ps I also have a book "complete reflexology for life" by Barbara & Kevin Kunz. I use this book on areas maybe 2 times a week and find it very helpful. As does meditation and light stretches. I do not meditate well but I try to do my best and it goes help me relax areas that need it.

I hate the chiropractor. Just basically do not like them never have and do not think I ever will. I had my back worked in maybe 9 months ago for likes 6 weeks.......was better but I cannot relax in that enviroment to have it worth my while. I think I pulled a muscle in my side in yoga ( geez how pathetic is that?). I do get regular massages after the surgeon gave me the go ahead but still could not let her do my neck for a long time, the dissection freaked me out and I had such a sensitive neck to begin with. I am ready to do accupunture on my lower back and put it on my credit card as it worked really well about 10 years ago on my bursitis/ tenditis shoulder. I have had a lower back issue for months now and it is inflammed and I cannot take NSAIDS. It cured my shoulder or maybe not cured but cure my chronic inflammation and daily pain from a particle tear I have. There you go - Hope this helps. maryb

I have recently started to work on my wifey/woman/household duties! I regained my work routine as best of my abilites but never my home routine. I have come really far the last month with cooking most days and being able to get myself up and do daily chores like I use to do. I also added some fun time in my social life or what was lack of social life as after working I can barely stand noise, movement ( people!), but that has gotten about 25% better. I am still hitting the wall and wonder if I am expecting too much and ask myself that once in awhile but so far I think I can still keep trying to add a little more to my life. I went to water aerobics 3 times since it moved back indoors and while the water seems extra cold to me I am doing better than I did in the outside pool this summer as that was just miserable and I felt drained, cold & could not stand the sun being in my eyes. maryb

Has anyone had a hormone test? I have only had it done once at the University Hospital In the city. Interesting that every other doctor dismisses it but back before I had SAH in 2011 so maybe in 2007-2009 when I was a exhausted, tripping, falling and hitting myself in face they tested me and I was so low that the Gyno there put me on 2 different HRT pills as my numbers were non exsistence. But when I was suppose to come back for a recheck that doctor left........once again gotta love the plan that works out with follow through. Anyway I was on them for longer than I should of been. A year later I had a breast lump that had a core biopsy done and I was sure it was from the hormones but it was from falling with the lawn mower a year earlier and I developed a thing called fat necrosis from the blow to my chest. Just interesting that no one even checks levels except big hospitals. I guess it does not matter but you would think if your numbers were in the gutter they would dose you different than if your numbers were just low. Just a morning thought that pop in my head. Maryb

As so have said before on BTG I gather my information from several sources. Having had fibromyalgia for 20 years that roller coaster is a familiar ride. If I may suggest reading about how to cope on a good fibro site about that. I read everything about fatigue including coping with Epstein Barr, ME, CFS etc. they often have such good helpful coping information posting on there. Even if it is not what you have it still is the same symtom and often helpful. As my doctor said it often does not matter why but what to do about it. I also look at traumatic brain injury sites as well for help.

I asked my gP today if periods of feeling well Is an improvement even when we hit the wall hard for a few weeks. He thinks it is a very good thing. So hey we are a normal. Let's celebrate!

I will be 2 years on Monday, NASAH- no known cause. Just now able to cook after work somedays. And on a good day do something around house. I cannot however on a bad work day. A few weeks ago I was just about begging for a good day - willing to lose my right arm for one or two days a month and then I had 7 in a row. I think THAT is a sign of getting better. May never be like it was prior but think it is a start of some added good days.

I have lived on that roller coaster for over 20 years with the fibro. AND I always think I am cured when I have a good day! LOL, silly me always falling for it. I had 7 great days a few weeks ago, now I am having to push myself a bit again. I do not think I have had 7 good days in 20 years mind you! I seem to be a good combo of meds right now but like today I spent 1 1/2 hours in dentist chair getting a crown so I know that will set me back. Even being prepared by taking pillows, ice packs and a muscle relaxer before going. I know this will set me back. The drills and the noise - forgot about those things!! If I could stand those I would of sanded some of my projects at home! Yes, set backs are a part of it but I feel I have one step forward, 2 back 3 forward, 1 back, so slowly I am gaining. Not enough to do yard work ( well it is like 100 out today) but I am still moving forward. After work Saturday which was an awful day I stayed on couch and watched 9 hours of NCIS. Sunday not much better. Monday went to work at noon till 5:00 - bad day. I am doing more at home than I have since SAH. It is so weird and backwards to have to learn a routine again. I had not notice how much my life revolved around work. A few weeks ago I went to a birthday party, I have done a few other outings that I normally could not of done or had the energy to do. I painted the foyer and it was like brain surgery picking out colors and getting prepared to paint. All of it was a lot of thinking and nothing routine or automatic for me like work is. We were to have work reviews yesterday but boss is out sick. I told her last week in surgery that although I am doing more at home I just cannot add more hours to my schedule - she said she "knew that -as when I am tired I have no filter". Hum???? There were 2 of my co workers in there and they spoke up and said that I am the most productive person that we have. But yesterday I felt like the stupiest person we had working there. We have a meeting on special pet food today and I was like "Nope, not coming in on my day off for that as I am not going to waste my brain cells learning something I can look up if i need to know as it is going to be gone before I got back into my car. Maryb

I do not have my "happy" back either. I too was the clown and I can muster up some once in awhile but I am not the same person. I do not have the energy or can muster up the power to small talk etc...I think my SAH damaged some of my emotions- as some cry and are more emotional I am less emotional and have never cried. I can almost cry on rough days when I see my GP as he understands me and my medical catch 22. it is almost the relief that he "gets me" without me having to explain it all. I am just now starting at 2 years to add my life to work. I got back in my routine at work but never got my home life back. I do not know what to do in my home as a routine and that is my ne thing I am working on. Happy? hum........ I am more pleased with where I am and thankful for the enlightenment that I have gotten from my SAH. I have always believe life is full of lessons and if you learn from the good, bad and struggles it makes more sense to me. I have learn so much the past 2 years. I am a better person and I feel I can offer more to some in need. I was always a hard nose, hard working, determined person with attitude by my attitude and compassion have soften. I love my GP and my neurosurgeon. I too have a horrible Angio experience which I won't even go into here. I could of filled malpractice I think. Never had any luck with any neurologist. I am thankful my friends, family and co workers as well as boss GET IT. So that is good and I feel fortunate for that. I could not imagine having people in my life that did not educate them selves on SAH etc and understand what I have been through. AS I would do the same for my friends. I learned more about stage 4 breast cancer with HERS than I even imagine I could a few years ago! Maryb

jhelms, So sorry you are still struggling so much. Have you gone to any therapy? I was thinking I did not even need it but just talking freely about my anger, pain etc really helped me move forward. I need to go back and check in with the therapist soon, but I think everyone needs therapy after having gone there. Not just us SAH'ers! LOL. Just a thought- I was surprised how pleased I was. Apparently I have a extremely high standard I expect out of people and I am not really so mean! It was also really important for me to "rearrange my thinking". I was at a wedding recently with a large amount of guest that were recovering alcoholics and addicts. I was thinking recovery for me from my SAH was similar and we really do not have much different. I had to hit bottom and give it to the fact I cannot change what I have no control over in order to move forward. I learned that in therapy as well. Hope you feel better soon, Maryb

I am so thankful I can get my results and a typed report within days if not hours of my scans. I think it is crazy that they cannot do that for you. I wish they HAD to give you a copy so you can keep a record for yourself. On the other hand I am still paying off my December 2012 scan of like $4500. At least if you have a copy of report you can research it when you feel better enough to understand. I would not ever of known or recalled I had damaged in occipital lobes if I did not read it. It took me 1 1/2 years before I even knew or understood where my SAH was. So I cannot imgine how anyone would expect someone with a brain injury to feel they "get it" and not "forget it" when they walked out of office. Oh your poor mom & family. I cannot imagine how that must be. My mother also had some mental health issues and I really did not get how bad they were until after she passed but I knew she loved me. She had dementia or Alzheimers later in life. She was really a hermit since the by brother returned home from Viet Nam. I wish I understood her better when she was alive. It is something I just did not get and I am rather ashamed of in hind sight. Not that she would of left the hosue to get it checked out either. SO kudos to you for understanding her now. Good lUCk Mary

Iola, I am so sorry that you have to deal with this attitude on top of your own health issues. I will say I am getting better every day and Monday will be my 2 year mark. AND I have damage in my occipital lobes & other health issues. I know things seem bad and it is disappointing to not be completely yourself yet. I have no doubt you will get there in time. I think we all agree we would take a facial scar to remind people it is a big deal. People just do not realize what a trauma it is. I would get better and go back and forth for awhile then get go up a few more steps. It is exhausting. Personally I do not even know how people can have a family to raise while recovering. I most of the time have a hard time even talking after work. I just do not care enough to be polite sometimes. I am in survival mode and it is all I can do to just lay down. My boss did tell me when I told her that although I am able to do more at home I cannot increase my work hours and she said she knew because I have no “filter” when I am tired. I have a review on Monday. It shall be interesting. I am fortunate that I work with people that “get it”. Most of my good friends “get it” as well. I am not shy talking about how I feel with them or other people I think I am “educating” people when I do. Good luck and hope next week is better. Maryb