Help!!!!!!!!!

[Ianankatie]

Ok, this is my first proper post on this forum (having used NDRF for more than a year) and it is a really bad way to introduce myself but I just dont know what to do!

I appologise in advance for what I know will turn into a massive rant about how bad I feel (even though I know full well you all suffer just as bad, if not worse) and potentially a lot of poor spelling and extra letters here anf there (my vision has gone nutts!!!)

Right, I am just gonna get it all out of my system!!!!

I have suffered VVS for as long as I can remember although only diagnosed 18 months ago and POTs since March this year- but I have never felt this bad before. Over time I have learnt to spot whats going on with my body, whether I am 'vasovagally' or 'potsy', if it is because I am hungry, tired, thirsty, hot, cold, in pain, stood up, lay down, got a virus etc etc etc- you know the story!!! Well now I just cant tell! I thought you may be able to shed a bit of light on whats goinf on!

I have suffered all of your typical VVS/POTS symptems, with constant fatigue and nausea as well as regular pre-syncope several times daily (as perfectly discribed in a post earlier today) and black outs at least three times per week.

i have been through all meds available here starting with Florinef then proprananol, bisopronol, paroxetine, midodrine, sodium chloride (lots of) and many others inbetween. To cut a very long story short my bosy just will not tollerate medication and I am now down to 0.25mg Florinef daily (I came off paroxetine just one month ago)

Although my symptoms have stopped me working, exercising, doing most normal things I had adapted really well and was coping great. i could predict my syptoms and manage it well. I had bad days as a result of doingg too much butr now this is rediculous.

My condition has continued to deteriorate at a steady pace over the past year but now its gone full speed ahead to distroy me!! Over trhe past two weeks I have gone from managing great to being horizontal for three days. My pre syncope is hoorrendous but I have some bizar new symptoms too (this is waht is confusing me).

For the last three nights after suffering pre syncope that just would not go by doing all the usual things I have had to be taken up to bed and ssuffered the worst black outs ever! Initially I felt the pre syncope but without enough warining to get down. I then wake up (one bo later) with my usual feeling of comming around- fuzzy hearing, fuzzy vision, room spin, sick feeling, not being able to wuite feel where i am. Normally that would quickely stop and I'd be fine but the last few days I have stayed in a funny feeling where every time I move my head I would bo again. i could feel myself loosing conciousness it was soooo scarry! My husband has seen me suffer sooo many times he knows we just have to work through it together but it got to the point where he was sdaying he had to leave me for a min to call an ambulance. Ian would never even consider calling 999 unless I was really bad. I managed to stop him and he got me in bed. I continued to drift in and out of conciousness for about 20 mins before comming around properly. But the worst thing of all this is the feelings in my head. I dont normally suffer to much with my head but this has been constant for about 5 days now, althouhg much worse when suffering an episode. The best way I can explain it is squeeze you face/head as hard as you can and you get a funny tightening feeling in your head and feel as though something is going on from ear to ear. I have this feeling as well as mad vision (trouble focusing, adjusting to light, blurred and unable to judge disatance).

The only thing that I have been doing differently is going to bed early (8pm) and getting up early (9am), where previously it was more like midnight til midday I slept. I came off the paroxetine a month ago but these symptoms didn't really come togetehr. I havn't got that feeling of a virus and havnt had anything for ages. I am however suffering occasional pain where my wisdome teeth are comming through but it has been okay the last few days (my worst days). I am baffled!!! My cardiologist (although great- the best I could ask for) doesn't feel he can do anything for me anymore and I am waiting to see a new condultant (Prof Mathias) in two weeks- so til then I am alone (hense taking it out on you lot!!)

Whats going on?????

So sorry to moan, but it does feel better just to get it all out. Thank you so much!

Katie x

[michiganjan]

Dear Katie,

I am glad you are seeing a cardiologist. I think the answer for you is to be aggressive with your doctors to get to the bottom of these extreme symptoms. With more knowledge about what is going on, you will be able to make better choices and have a better chance of getting to feel better.

I don't know what tests you have already had, but it sounds to me like you may need more. And you can insist that your medical team keep on doggedly digging until some light is shed on what is happening. Have you told your cardiologist about the "ear to ear" symptoms? It is important that you do so.

Now . . . how do you get through in the meantime. Keep telling yourself that the level of functioning you are experiencing right now will improve as you find at least some answers. Keep telling yourself that this is now and not forever--that with medical help you will live through this awfulness and get to a better place.

Do whatever you can to quell the panic you are feeling. Anxiety and panic are not your friend. They can exacerbate symptoms, certainly they do not help them. Think ahead to next month, when you will have more medical knowledge, be more peaceful, and be feeling better.

[taylortotmom]

Welcome and I am so sorry you are having such a hard time right now. Have you seen a neurologist? The sxs you describe need to be checked out. Migraines can give you those type sxs (yes, even lasting for days) but so can other things. We have talked a lot on this board about migraines recently so look over some of the recent posts. Migraines are not "just bad headaches" they cause a myriad of sxs and sometimes you can have really strange migraine sxs and not have headache pain. But, as I have already stated since the sxs are new and more severe for you get them checked out- even if it means starting over with an additional doctor. Good luck.

Carmen

[ben_uk]

Hi Katie

I'm really sorry to hear about the last few weeks. I hope it improves very soon.

I am also seeing Prof Mathias. Which Cardiologist do you see?

What condition(s) do you have? Do you have POTS as well as the synscope?

Hope you get better without delay.

Ben

[Ianankatie]

Thank you so much for your reply. Just knowing that there are people there makes me feel bettter. I have had lots of tests, all that my cardio is aware of (TTT, holter, brain scan, autonomic function testing etc) but I have a feeling that I may get different results when they are viewed by a neuro aswell (my cardio is not a fan of the general dysautonomia diagnoses- he believes my VVS/POTS have nothing to do with the ANS- something I disagree with)

Anyway not long to wait now- your right I will look forward to having some light shed on it all in two weeks time!

For now (to keep my husband happy) I have managed to get an appointment with my GP for this afternoon- they don't really understand VVS/POTS but it may stop the worries aboput my funny head!!!

Thanks again-hope you're well

Katie

[Ianankatie]

Hi Katie

I'm really sorry to hear about the last few weeks. I hope it improves very soon.

I am also seeing Prof Mathias. Which Cardiologist do you see?

What condition(s) do you have? Do you have POTS as well as the synscope?

Hope you get better without delay.

Ben

<{POST_SNAPBACK}>

Hi ben

Its nice to hear from someone else in the UK!!!

I am seeing Dr Somauroo in Chester who has been absolutely amazing-the only person up here to listen to me!! Unfortunately as I said before he doesn't believe so much in the way that Vasovagal and POTs can also effect the rest of your body-thats hopefully where Prof Mathias comes in!!!

Originally I only suffered Vasovagal syncope but I seemed to develope POTS last year wehen my heart began working over time to prevent my black outs. How about you?

How have you found prof mathias? I feel so lucky to have been able to get an appointment with him through my health insurance. i can't wait!!! I know I shouldn't have too higher expectations but I really just want reassurance. What tests and medications has he put you through? Hope you don't mind me asking!

Thanks for your reply

Katie

[Ernie]

Hi,

I would get tested by a syncope specialist to find the root of the problem (if possible).

I know you can't tolerate meds but have you tried IVs?

[Ianankatie]

Hi Ernie

Hopefully when I see Prof Mathias he will be able to get to the root of the problem.

I am still on Florinef which seems to be okay but my body has rejected everything else either immediately or after a few weeks of treatment. i have never tried IVs, never even been offered the chance. I will check out some past posts but can you tel me more??

Thanks

Katie

[mom4cem]

Welcome. I wish you the best on your visit and hopefully you come away with knowledge on how to deal with what is going on in your body, what is going on etc.

Till then please do whatever needs to be done to keep yourself well.

[Eillyre]

Sorry I haven't anything useful to add to what's already been said, Katie . I wish I had a brilliant answer, but I don't. Welcome anyhow!

I hope your next appointment goes well & that they're able to get you back to reasonable functioning.

Angela

[Gena]

Katie,

I am so sorry you're going through a rough time. I know it feels awful not to have some control and management over your symptoms. I would definitely get some tests done neurologically and cardiology, even ones you may have had in the past that were normal. Never hurts to test again, especially if you're symptoms have changed or gotten worse.

I agree with Ernie, if you can get your doc to write a standing order fo IV saline solution this might help your body recover from this slump. I've never tried it, but I'm getting ready to ask my doctor for an order. I've fallen back into a hole to and I'd been doing quite well for so long. I know mine was stress induced, but now can't seem to recover even after the stress is gone.

One other item to consider is compression hose. I didn't see that mentioned in your previous post. I'm going to order some this week myself.

Hang in there. Even if it's by a thread. Believe that you will improve. I found this quote that I really like...

How wonderful it is that nobody need wait a single moment before starting to improve the world.

Anne Frank

Hugs,

gena

[ben_uk]

Katie - I haven't seen Prof Mathias yet. I have an appointment lined up end o thisd week. My new GP (who is also a neurologist but not an autonomic one) is pretty sure I have POTS or some other autonomic condition.

I am nervous about the appointment but also looking forward to it - I am finally going to see a doctor who understands what I have been going through for ages. I have seen 3 other neurologists but they all just said "its anxiety", even though I had a brain injury.

I will let you know how I get on.

By the way, it is a good idea to jot down your symptoms and bring it with you to the appointment or better still, fax it through to his secretary beforehand.

Hope you feel better.

Ben

[Ianankatie]

First of all- thank you everyone for getting back to me so quickely. You are all a great help!

Ben- good luck this week- I'll be thinking of you- let me know how you get on!

I have just been doing a quick bit of research into the IV stuff and think it may be worth a try- well anything is worth a try, I'd cut my right arm off if I thought it would help!!! I am just not really sure how it helps? My BP isn't too extreem- which is one reason why I have been worried- I don't feel typically 'vasovagally' although it does drop when I stand. My HR is sticking quite high- normally it settles when I lay down but again it isn't really too high.

I am nevous of drinking too much as I damaged my kidneys earlier this year drinking lots of water as advised by my cardio. Water does help my symptoms though.

I know you are not doctors but based on your personal experience do you think IVs could help my syptoms?

Does anyone know where I can find some info to take to my doc this afternoon- I am going at 4pm (in an hour) a little short of time I know but I do think its worth a go- I just can't shake this feeling off this time!

Thanks everyone

Take care x

[taylortotmom]

Hi, I'm an iv pro as I get daily iv txs via my port-a-cath. I have a permanent cathether in my chest in which I receive iv lactated ringers. Lactated ringers have not only saline but potassium and sodium, both are important in the management of my sxs. Saline treatment is getting more widely used in dysautonomia patients here in the US. For many it helps with blood volume and for all of us it helps with dehydration issues. Some of those bad migraines we get are the result of dehydration. As long as there is a balance of fluid and sodium, iv "hydration" therapy can be extremely beneficial. You might want to do some research prior to your appointment and discuss this with your doctor. For me personally, no other treatment has helped me as much as being able to have iv treatments at home as often as needed. Everyone is different but this has helped a lot of us. Good luck.

Carmen

[Ernie]

Hi Katie,

I have standing order for IVs so that I an stuck in a viscious circle (never ending fainting episode every time I stand) I go to the ER to get an IV. So far, it's the only thing that stops the cycle.