New to Forum and lots of questions

[yikespanic]

Hi,

I'm new to this forum and have so many questions. I had a bad virus last Dec 04 which left me with a long lasting ear infection which progressed to dizzyness and vertigo. Not quite spinning but very dizzy and had continual car sick feeling and fatigue. Underwent vestibular testing at the Cleveland Clinic. They said my ears were sending my brain one signal as to my balance and my neck nerves were sending a conflicting signal thus the vertigo. At this same time I was complaining of not only dizzyness, but when I would stand up, reach up with my arms for something, or stand in one place like in lines I would feel the blood rushing from my head seeing stars. It was happening while I was driving, and scareing me horribly. I began to have panic attacks during this time also. Finally after being bounced from several specialists, one even telling me it was my immagination, I was sent to a rheumitologist at the clinic. After telling him all my complaints, he took my BP, and continued to take it while I was in several positions over time. He told me he thought I may have positional hypotension. Finally something, a name. Maybe I wasn't crazy and immagining all this. He prescribed Atenolol. I was sent to Dr Fouad at Cleveland Clinic. After many tests, (tilt table, blood volume, medicated stress test, and a few I don't even know the names of, over two days.) She diagnosed me as having orthostatic dystolic hypotension, and rapid blood flow heart rate. Because I was on Atenolol at time of test, there is the possibility that I also have POTS as I was borderline for this and the Atenolol may have interfered with results slightly.

My Atenolol was changed to Lopressor because the Atenolol seemed to make me feel depressed. The problems I am having is that now I am feeling depressed again and I am afraid it might be the Lopresor. I went to my Internal Med Dr and she said she understood about my condition and put me on Nortriptyline. I took it for about a week and noticed at Thanksgiving I couldn't even stand up without feeling like I might pass out. Called Dr. Fouad and she said STOP taking it, it isn't safe for me. Now I don't feel comfortabe with my internist. She prescribed something that she shouldn't have. I changed to her because after explaining my condition to my old Dr. when I had my physical she said it wasn't necessary to take my BP positionaly. I couldn't believe it. Why arn't Dr's aware of this problem and it's care? Where is someone to turn? I heard of a Dr in Toledo, Dr. Grubb, I am sending him my medical records, but they said no appointments till late May early June 06!!!!! Does anyone know of a Dr in Northeast Ohio, who understands these conditions and can properly treat? Dr. Fouad doesn't normally see patients only tests and diagnoses. She said she'd see me until I found a Dr. Even a bad sinus infection I had recently was a problem, cuz my internest gave me entax, Fouad said not to take it, it would increase my heart rate that is already to high. YIKES!!!!!!!!!!!!It's so frustrating!!!!!!!!!!!

The other side of it is this. Everyone asks me my don't I go back to work! I don't look sick. They don't understand how I feel on the inside. Some mornings I am so fatiqued, I can hardly drive my kids to school. Then I am afraid of getting dizzy while driving. Then I'm franticly making sure I have eaten something saltly enough times throughout the day to keep BP up to keep bad symptoms down. Then because I've gotten dizzy while driving and it triggered panic feelings I have developed anticipatory anxiety even before I get in the car. I feel like how did this happen to me!!! On top of all this, about the time I orginaly got sick in Dec 04 I have been under alot of stress. Somehow I feel this has played a part in doing this to me.

When I saw this site I was so happy to see that there are others in the same situation. (I'm not happy your all having problems, just that I am not alone.) I don't know a single person who has this type of problem. I feel like I am on a merry go round of symptoms, fear, panic, anxiety.

I'd appreciate any suggestions

Kim

[becky]

Hi kim,

welcome to the forum, i'm sorry that you are so ill but glad that you have found this forum with lots of people just like you.

i have the same kind of problems with vertigo, i'm being referred to a ear nose and throat specialist but i'm not sure it's my ears - anyway sorry going off track.

If you don't feel safe enough to drive, if it's causing you to be dizzy or anxiety attacks then you shouldn't do it, is there anyone else who can take your kids to school? I'm not allowed to drive because of my condition, i have to go six months without passing out before i can drive again.

Don't let people who say you should go back to work bug you, they don't know what's going on in your body, this unfortunately is like an invisable disability, unless you are white as a ghost people can't tell that you are ill.

hope that's some help anyway!

lots of love and hugs

becks x x x

[yikespanic]

Hi Becky,

Thanks for the encouragement. I have not passed out completely, (only seeing stars and having a feeling like I am losing my hearing and having to sit down.) only one time, and that was when I was 8 months pregnant with my daughter. It was in church after having been standing for quite awhile. This was 18 years ago, long before my diagnosis. I have always had low BP and Dr said when I told him about this one episode that it might have very well been there but not to the extent it is now. I think my problem with driving is mostly anxiety. Since being treated and knowing about keeping myself hydrated and increasing my salt intake and being on beta blocker I have not had the extream lightheadfeelings except for Thanksgiving and my reaction to the antidepressent I tried. It really lowered my BP to much. My fear of the Panic feelings fuels my fear and increases Panic feelings. My Dr thinks I might have developed agoraphobia. I am afraid of the Panic and accociate it with the car because thats were my first Panic attack happened. By avoiding the car I am reinforcing my fear. If I face my fear and continue to drive I can slowly get over my fear. At least thats whats suppossed to happen. If I feel dizzy due to BP in any way I can have someone drive the kids. I'm sorry your expreriencing vertigo. I know how horrible this can be. I saw an ENT and he sent me to a vestibular specialist. Our ears do a lot more than I ever relized. They truly are remarkable. I know I shouldn't let what other people say bug me but its hard. I would like to feel better and get back to being me. I am just trying to be positive and make the best it.

Thanks and Take Care

Kim

[Sunfish]

hi kim -

just a REALLY quick welcome from another clevelander (as i'm on my way out the door.) i'll write more later.

hang in there,

melissa

[Stace915]

Welcome! Unfortunately I think most of us know exactly how you feel re: not having a name for the illness and no one knowing what was wrong with you~ I fainted the first time last Feb. after having the flu and it has just gotten worse and worse since then, but when no one could figure out what it was I really thought I was going crazy! I finally found a great specialist that I am working with but there are still really bad days and a few good ones in between and I find that "normal" people have a hard time understand the seriousness of this illness because most people have never heard of it.

I hope that you are able to find a good doctor to work with (there is a list somewhere on this site for specialists through out the country http://216.149.163.247/cgi-bin/Ultimate.cg...assCookie=true) I hope I helped a little and you dont feel as alone, it can be very depressing sometimes. Good luck and feel good!

[yikespanic]

http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

Hi Becky,

I had this in my favorites, it's a manuver to help with vertigo. A friend of mine tried it and it worked for him. I havn't tried it yet, but it's worth looking into. It might be of some help.

Kim

[Poohbear]

I'm actually on my way out the door but wanted to quickly say hello and welcome.

I'm sorry you had to search for a site like this but I'm glad you have found us and I know you will get lots of support and information here.

I will write again later.

Meanwhile, keep researching and talking to people. You can do lots of great searches here and on the internet in general.

[mom4cem]

Welcome. Glad you at least got a diagnosis and some treatment and you are in an area where there seems to be many specialists. It is tough to find a reg. internist to oversee everything, to understand what we are going through etc. I hate Dr. shopping.

Don't do more than you are able to do and let not anyone tell you what you should be doing. Just because we can put on makeup, do our hair and look presentable does not mean that we feel as good inside as we look outside. Hey, makeup does wonders for me but turn me inside out that would scare anyone!

I'm sure you have been pushing fluids also but just in case not, do so. I have allergies and that seems to trigger dizziness in me, I get car sick easily, smells bother me and the list goes on.

Glad you found this site and welcome again

[Ernie]

Hi,

Welcome to the board.

[Mrs. Glass]

Hi Kim, sorry I havent responded before now ,had to have surgery on my back, and this is the first day that I have been able to sit at the computer for any length of time. You have come to the right place for support, understanding, and maybe some answers. Sorry that you had to join our little group here but since you do welcome! I am relatively new to this site and it has helped me a lot. Some times a person just has to vent to people who know exactly what they are going through. All of the symptoms that we go through on a day to day basis, sometimes is almost more than we can bare, but at least we have the support of this lovely group. Hope you get some answers to your questions. Mrs. Glass aka Vanessa

Edited November 30, 2005 by Sunfish

[Guest Mary from OH]

Kim,

Welcome to DINET, we're a group of wonderful people from around the world with many experiences, different knowledge bases, drs, symptoms but most of all we're a WONDERFUL support group and educational forum to be there "when you need it most"!!!

I'm originally right from where you live (Parma) and now live in a suburb of Columbus, OH. I was dx with POTS several yrs ago now, but now know that I've had it my whole life. I also have SEVERE migraines, fibromyalgia, inflammatory bowel disease, and myofacial pain syndrome. Interestingly enough, I married a man who ended up being diagnosed with SEVERE Vasovagal Syncope about 12 years ago. His came on with sudden onset. (But, who knows he's a male who tends to ignore and under-report his symptoms, so it's hard to say!). We have a beautiful 6 yr old daughter who has SEVERE motility problems and POTS and migraines as well. We're one little happy(?) Dysautonomic family!!

I think I've PM you and emailed you through the DINET Meet Others program. I can totally relate to being bounced around from dr to dr and them not knowing what to do with you. That actually happening to me for almost 3 years when I was having what I know NOW to be a HUGE POTS flare up. No one knew what to do with me. And, like you and many others, I was subjected to every test known to mankind. But, of course, no one helped me. In my case, they never went the dysautonomia route back then.... It wasn't until 6 or 7 years later when I got an astute new family dr that I was properly diagnosed.

And, BTW, I can't take Entex either!!! BAD news!! IMHO the anxiety thing is all a part of the POTS thing. It has to do with the increased adrenaline and the fight or flight response and our body's inability to deal with it appropriately. I also believe that probably MOST of us on this board are by nature Type A personalities, especially when we're "feeling well". I personally think that if you can get your POTS controlled better, the anxiety will decrease. It seems to for most people. Although, I do think that most people with POTS exhibit more anxiety. Does that make sense?

Looking forward to getting to know you better!! And the nice thing is that this Forum is available 24/7 and because we have such an international membership and members from all over the US as well, people from different time zones are always on, so you're usually apt to find someone to talk to. Well, I've chattered on MORE than long enough...