Has the doctor done an EEG on you re: seizures?
What about a VNG- have you gone to an ear, nose and throat specialist for this test to see if the aversion to visual stimuli has anything to do with a vestibular system problem?
RE: heat intolerance, have you had your thryoid function tested? See private message re: MS and heat intolerance.
I have had my head swell with pain (suffer migraines) with heat on my head before. Heat of hot water can cause worse dysautonomic symptoms for me.
I went to a ear nose and throat and had testing there seemed all was okay, they did send me on to a dizzyness ??? theripist she found if I closed my eyes I immediately lost my balence. My insurance would not cover therapy there so I was given things to workon at home and I do but it never seems to improve and it gets significantly worse when I have'flares'.
I am hypo thyroid and have it tested twice a year. I asked my neuro if I might be misdiagnosed and have MS when I started having alll of the heat intolerance symptoms he said he had one other paitient several years ago with lupus that had presented with symptoms that acted incredibly like mine and had him worried about MS off and on for years. I also agree about the hot water, I love a good soak in hot tub, but have had to give it up, seems lilke so many things I used to love are just gone from my life now and I am liveing sort of issolated waiting for answers I am really tired of being alone and having no answers and having the majority of the world think I have a screw loose.
All not okay that they sent you on to therapist! Sounds like a definite vestibular problem! Did they check also your neck (part of vestibular system too)? Think you should get checked for Addison's disease in your search. Are you hypo-thyroid due to the thyroid or faulty TSH? Glad you came to the forum and hope you feel a little less isolated!
this is a stretch for me trying to remember, and my recordsa are in the wind, actually in a Drs office, (same difference some days depending on the Dr.) My TSH has been checked I remember having them say it was okay. I also remember asking about Addisons and being told I was fine not to worry about it. I am obviously not fine so I didnot go back to that Dr he did not have a good grasp of the situation. Endocrinologist.
He did rule out a lot of things I guess, but he was a arrogant soul.bad fit.
The therapist was actually for physical therapy, but for people that were specifically having problems with dizzyniss. My insurance for some reason did not think that was a reasonable charge and would not allow me to attend the therapy sessions. Wonder how they would feel it they were walking down a dark hallway and would loose their sense of up and down and run into the wall and the just flat outfall on their face. Or if you pull a sweater over your head and get it caught and are in the dark too long you loose balance and are on the floor pretty fast. I just sit on the bed now when I get dressed. Nightlights all over the house. Climb a ladder and tip my head back to look up to do something fall backwards off the ladder every time. No more ladders. Wish I could tell you more concrete answeres to some of your questions, but I dont have my records, not all Drs are good about allowing your to have them and if I did have them My husband id holding most of my possesions hostage ( this is my own small attempt at a joke) for his own weird reasons. I think so I will have to go and purchse new things that I already own so I waste my money. Cute huh? Childish. Thank you for your questions it does jog my memory and makes me think of things that I have not considered for a while. I had not realized how foggy my memory was on some things. It is good to be here. You are the only perso I have correspondeded with so far. A question Do you have problems with typing and spelling? I am having a horrible time. I keep having my fingers type the right side letters with the left side hand, that does not work out at all. or I will type the third letter second and the second letter third constantly reversing things sort of like dyslexia of the fingers. My spelling has become so bad I have just given up, and hope people can figure it out and I keep forgetting to run spell check or when I do I hit the wrong thing and loose my whole message so I have stopped running it. Does anyone else do this, I find it incredibly distressing. I run 3 online businesses so my typing is pretty important in describing things.It is worrying me. Thank you.
Yeah, I figured that was what the therapist was for, since I have an immediate family member with vestibular issues that got therapy for it. Walking in shadow is difficult and standing in church at a slant, things like that.
People I think come on here in spurts, particularly those who have really bad stretches with their dysautonomia at times. Often a lot of support on this particular forum.
The reason I ask about the TSH, is because it was low, even though your thyroid was sluggish, you should be getting a dynamic MRI of your pituitary, with and without contrast to look for a tumor, etc., that could be de-pressing the thyroid stimulating hormone. You have a right to your records. You may have to pay money, but you have a right, so you should pursue this.
Sometimes I am typing the wrong word. I have an immediate relative who is complaining about dyslexic typing. You may want to frequently hit control C, to copy your post thus far as you go along- I've had frustration from losing posts, sometimes from hitting something wrong, sometimes with connection problem when I hit post. Know there is at least one person on here who wishes there was spell check.
Have you heard of any one else having the issues with crowded areas and audio and visual stimuli that I am having? My friend asked me this moring if I was comin to church and if I was giving it any thought and it took all I could do not to snap at her. Does she want me to have a couple of days that are really horrible recovering from all of the stimuli that I cant seem to handle just to please her? I just dont get that!
Some times I reallywish some of them could walk in my tingly feet for a couple of days and have to go into a crowded store and deal with the sensation of a seizure coming on. Most people have never had one, recovery from one is not fun so why would you put someone into that place?
I feel odd enough having that weirdo symptom, that everybody looks at me when I tell them why I dont go anywere any more. I feel like a vampire, I usually only go out in the off hours. Nuts Thank you for listening to this crap.
You might tell your friend you are a semi shut-in because of your physical infirmities. If she is a Christian, she hopefully will demonstrate compassion that you have vestibular problems with visual stimuli and it makes you feel like a seizure is coming on, along with peripheral neuropathy challenges. Many churches have ministries to shut-ins, those who can't get in to church for one reason or another.
I think you should appeal to your insurance about vestibular therapy- get the records of the results of that testing and tell them how bad it is for you. You might be able to improve if you get proper therapy.
Hi! I was also going to suggest you have a pituitary MRI done, but Surgi beat me to it! (Hi Surgi). My son developed dizziness and vestibular problems, crowd avoidance, light sensitivity, and symptoms of hypothyroidism a few years ago. I discovered from internet research that he had Sensory Integration disorder, and got him into therapy with an Occupational Therapist. OT's are trained to test and treat disorders of Sensory Integration.
Unfortunately, four months into therapy, a reason was found for my son's sensory problems. He had a pituitary MRI done which found a large craniopharyngioma, crushing his pituitary, causing significant hormone losses. Cranios are also classified as central nervous system tumors/cysts. He had surgery to remove the cyst, but not before significant damage was done.
There are many books on Sensory Integration Disorders, and many successful treatments. There are diagnostic codes for Sensory Integration problems, and if a therapist diagnoses you with this, your insurance should help pay for therapy.
I hope you can get the therapy you need, and definitely ask about getting a pituitary MRI. If you have no CNS cysts or pituitary involvement, then I think you would benefit greatly from Occupational Therapy.
it seems like a long time ago I remember asking one of my Drs if there could be a tumor on my pituitary and was immediaty assured no. Thinking about it now I am wondering how he would have been able to have been able to answer with such positivity with no testing on me at that time. I think that was right after I had come back from having a angioplasty , the nurse said it was the fastes she had ever had a patient have. I was m ortified because the twilight anesthetic worked oddly on me it had never worked this way before but it turned me into a horrible obnoxios person that would not shut up. I could feel the entire surgery and was very vocal in my dissaproval of the situation. The entire team rushed throught the proceedure and got me back to recovery ASAP. MY stress test had shown cardiac involvement with excertion but the Dr insisted all was okay. A different Dr did the procedure than had read the test and was actually my cardiologist. My actual cardiologist came to see me and looked at my pre surgery labs. I had very low sodium, and low potassum, He said it could have been due to the high dose of prednisone they had to give to me. I had to have a scan of some sort and I am allergice to contrast so the Pred was to dampen any effects of the allergy. So no one gave much attention to the low sodium and pottasim. I tried to tell him I often had low sodiym and pottasium on blood work, but he didnt seem to be listening. I told him I had gained a lot of weight recently and I was wondering if I might have a pituitary tumor. Then my husband butted in and told him I had probably got that off of the internet and he was sick of me finding crap on the internet and thinking I had it and I proably just had ate a bunch of crap like most fat peo;le did. Man is My husband a piece of work or what? The cardiologist thought a while and said he would go and talk to my neurologist and left. Unfortunately the next time I went to my neuros office I had a TIA in the waiting room and things have sort of been unstable ever since. I do appreciate your input, because to tell you the truth I had forgotten some of that and without your comments I doubt I would have ever thought of it agian. This group is good for me. Thank you all.
enzmelover Hi- glad to have additional support for heeler here!
heeler- Are you taking any measures (for example, taking as prescibed aspirin or plavix) to try to prevent full-blown stroke?
yes, I take Plavix 75 mg a day I had a light stroke on my right side 3 years ago and have had TIAs off and on ever since one right in my neuros office talk about timing huh:?
This deal of my face and left side becoming so weak and sagging is frighteningly similar to my TIA symtoms except it lasts all day sometimes. And today I was so confused and nausous and didnt want to eat, for me not to want a piece of the coconut cake I baked yesturday is frightening. It is still uncut. My mom called and asked how it was and I said I hadnt had a piece and she immediately wanted to know what was wrong with me.
Moms they know us so well.
Yes, they do. How are you now? Did you go to the ER for the stoke like symptoms? I'd been thinking if you keep having low sodium and low potassium, they should try to diagnose the cause, as well as monitor closely. Are you on potassium supplementation?
sort of the same, I went to my GP, he gave me a antibiotic because my lungs sounded congested and I have beencoughing up yuk. I told him all that had been going on and he asked to make sure he got reports and he should after all he came up with the idea originally. I am not on any supplements, but while there he printed of a sheet from Wikipedia. He is a huge supportor of holistic medicines and went to Yale or Havard one of the Toffee schools to learn acupuncture My insurance refuses to cover it. Any way he was talking up Orthomolecular medicine to me, I am clueless and have to read about it. Does anyone else have any experience with it? Does it work? not work?
Plus when I got home my mom called and she had a mini stroke on the way home from blood work with my brother, I am sure it was one he is a EMT so he would have known what he was seeing. I thought her face was sagging the other day when I took her to get her glasses and left him a note to keep a eye on her blood pressure, He lives in the same town. I have been trying to get her to move in with me so I could keep a eye on her., but she is very stubborn. I think this may be the straw that breaks the camels back. I really do not think she has many more months on this earth and I would like her to spend them with me. It will tell and God will work it all out. Every body think positive thoughts it is the first time my brother and I have talked in years from missouri and I have missed him terribly. Thank you all for this place of infor mation.
Hadn't heard that name, but think I had something along that premise for a time through an acupuncturist. Can't tell you if it helped any or not. I'm sorry about your mom- hope she is getting medicine to try to prevent another stroke.
You and I have identical symptoms - the same triggers. Walmart is a nightmare and nearly impossible to get out of there without having an episode. Sensory overload is another trigger - too much audio and visual stimuli will induce an episode, as well as heat with humidity, a sudden sharp pain, intense exercise, going from a sitting to a standing position, and chaotic crowds. Lately I've had a few episodes that involved no triggers when I was sitting in a relaxed, climate controlled atmosphere and I find that even more disturbing. And just the sun coming through the car window on a nice day is triggering it now. So the cool air needs to stay on, preferably blowing towards my face.
Luckily, I don't have seizures as my EEG shows, but a tilt table test revealed I have a very bad case of Autonomic Dysfunction. I've had this since I was a teen, but it has worsened over the years. My heart doctor, who I saw yesterday, put me at an 8 on a scale of 1 to 10 (10 being the worst.) I was stunned when he said he's had a few patients end up in wheelchairs from this due to not being able to stand without passing out. He scheduled a heart cath test next week. It has to be done in order for him to prescribe another medication because Fludrocortisone doesn't seem to be working. But I am having second thoughts about this test after reading about the risks involved, which sound worse than what I have. I may cancel.
My mom came home with me today. I am not sure if she had a TIA or a small seizure., as you all know the symptoms are very similare and only by being there at the time and conducting certain tests cant you know for secteain.
My brother who was wtih her at hte time is a EMT. He did not take her back to the hospital and I have to say I do not agree with his decision. She had a head ache in the back of her heac and neck was confused and very tired. She could not remember time sequence or who or when she had spoke t o some one
Sorry I keep falling asleep typing.
Today she finally decided to come and live with me, when I pointed out about the fact that TIAs could often be followed up by more TIAs or another stroke. I said as forgetfula s she is I was afraid she would forget to press the button on her LIfe Lock alarm button and she agreed she might.
I am going through a divorce so purchasing a house yet is not a good idea. We will try to find a housw large enough for our furniture and that we both like and with a option to purchase after my divorce with the stipulation they remove the house from the market now. Sounds too good to be true huh: Yeah I thinks o too. Buyers market in out town. we will se. falling asleep in my chair so ited. so worried . what if.....? I cant even decide what if I mean there are soooo many.
Personally, I think your mom should be at the doctor's right now with her symptoms to get properly treated for her medical crisis- that's what it sounds like to me.
Also, I feel you both need an in- home health care professionals around the clock, so may I recommend trying to find one with 3 bedrooms?
Hi, things have improved somewhat here. Mom is much more her self. I am still exhausted. She really has no true understanding of the huge responsibility that I am attempting to take on. My brothers have made no offers to assist in any way shape or form with labor or financial assistance if needed. Surprise surprise.
We looked at houses yesterday to move to as the house I am in now is very small. I has two bedrooms but tiny.Hardly any storage. No room for Moms furniture. My divorce is still in the wind months away from being settled. The idea was to rent with option to buy on a house. We found one we liked I had looked at it earlier in my personal house hunt.
I came home and emailed the link of the listing to my lawyer and spoke on the phone to him. He advised against moving at this point.in the divoirce. So here we stay. Mom is not so happy and is talking returning to her apartment several days aweek alone to sort through things not a good idea obviously.
She means she will stay there alone for 48 hours. All of the stress of trying to make everything fall into place smoothly for her has taken its toll on mau. Just feel lilke pooh.
We get along well and after along talk at supper where I told her confusion is a very humbling condition and insisting you do not have it and have not done any odd things only makes things more difficult for those trying to help you and for yourself.
She asked if she did that and I said constantly, but only because no one wants to be confused and wrong. I have unfortunately been right where she is all too often so I have walked in her houseslippers way too many times. I understand all to well what she is felling right now the confusion, anger,denial,Scarlet OHara syndrome comes easy at this point if you can even think clearly enough to decide to thing about it tomorrow.
Oh well I wish I could find a nice three bedroom facility with storage and full bath, hopefully with office space, unfortunately my lawyer would advise me to not move into it so there you are. :)
Sorry you are having such difficulties right now. Glad your mom has improved, but hope she is going to be seen by a dr. about the possible mini-stroke episode anyway?
Yes mom has a appointment at the neurologist on monday. I will be so glad to tke her there. I posted something new tonight. If you get a chance will you look at it Surgi? It is a new symptom and is drivignme crazy. I am noticing when I look down now that it is as though the the light flickers in the room but it is not, weird it must be from the vibrations. my crazy mind is now insisting on playing the beach boys good vibrations over and over in my head but I dont really think this is good I think it s the pits makes it hard to see.
I am supposed to pick the best answer on this question and I cant. All of your answers are valuable to me. I have been at sea on this for so long and the answers I am finally starting to gather here are worth so much each and every one of them. I cant count one above the others. Thank you everyone who took the time to type out the words to help me. THis is a incredibly stressful time for me in so many ways. You are all very helpful to me.
Hi Heeler50, I too have the same symptoms as you the extreme heat intolorance inability to go into dept. stores or crowded loud areas especially flashing lights brightlights all that.... about three years ago i was dx with autonomic dysfunction thanks to my cardiologist who has a special test to dx it.. I went to many doctors before him MANY.... and the racing heart and high BP was anxiety/panic to them nobody "got it" I live at the beach so I am a sun person and when i couldn't go to the beach or play outside with my son because it felt like my heart was going to explode I knew it was NOT anxiety...I felt like i was going to just collapse... So my cardioloist started me on 20mg of Coreg CR and I had almost immediate relief...I would say my symptoms are 95% better, I still don't push it in really hot weater i limit my time at the beach...I am able to go to the gym and exercise... but the days thatI feel symptoms I just take it easy...thanks for sharing your symptoms it always nice to know your not the only one... :)
I too have problems being in crowded areas and brighlights. I've been diagnosed with Hyperadrenergic POTS, currently I'm taking Clonidine and Celexa, my Celexa has been increased and I've been able to handle the stores a bit better but I still cannot be there for too long, 15min to 20min tops, otherwise I feel so sick and I have to come home inmediately and then I feel sick for a few days.
Heat drives me crazy! also I can tell you when it is going to rain up to 24hrs before it actually does, I feel very sick, the forecast might say sunny but I can tell you that it will rain and it never fails. Taking an antihistamine helps me with that but not the heat, for that remaining in an airconditioned room is the only thing.
I am at home a lot! but being that if I stay home I can function better I have not minded yet not being able to go out as much, plus our shopping expenses are much less too so that is good.
Would like to hear how everyone is coping with these symptoms and what treatments have given you some relief.