Nikki Posted March 1, 2010 Report Share Posted March 1, 2010 The past two weeks have been really rough for me. I have almost constant dizziness and it will just not ease up. I have to spend most of my time laying down just to feel decent (even then I'm still a bit dizzy!) but this has me wondering..I was diagnosed in October of 2009. I had the tilt table test done and have taken a beta blocker and florinef since..but nothing seems to have changed. I'm still lightheaded everyday to some extent, and still have these really bad times where I feel like this medication hasn't helped at all, and isn't going to..So I guess my question, or questions, are - has anyone ever had such horrible dizziness for weeks on end? Even months at times, without much break? If I do feel better, it's for a day or two and then back to being *really* bad again..Also, what happens typically when you're diagnosed? Do you just try different medications until something helps? Are there more tests that doctors usually want to have done? I really want to feel better and not so dizzy all the time..and I'm fine with trying medications, but when they don't help I just feel like I'm wasting time, and that there has to be more I could be doing to get better..My doctor basically said to try these and come back in 6 months. I called today saying nothing has helped so far..but I'm just wondering if it's just a long process of trial and error with medications until something works for everyone.Any advice is greatly appreciated! Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 1, 2010 Report Share Posted March 1, 2010 Nikki-A big question. Help me understand "dizzy." (Another member recently got annoyed when I asked this question, but the clarification is really important.) Does the room feel like it's spinning & won't stop- dizzy? Or do you feel so lightheaded that you will faint- dizzy? I ask because the treatment is quite different. You are being treated for the latter now. What is your BP and HR doing supine and upright? Are you also taking plenty of salt & fluid with the florinef? Any other symptoms?Julie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted March 1, 2010 Report Share Posted March 1, 2010 For my son, he doesn't have the constant dizziness, he has constant nausea. He has been in bed for the past month almost non-stop. Some days he has been able to get up for an hour or two. This has been the worst month since becoming ill. He was diagnosed last June, but didn't start getting help from doctors until October. For us, it has been trial and error with different medications. Most of all of his other symptoms with the current medication are gone, but the dibilitating symptom-NAUSEA, is still there and getting worse. He is on homebound schooling and we haven't been able to have his teachers come in a month. We are going back to Cleveland next week and they are going to try a new med then. It is an injectible so they have to train me on how to give him shots. So our experience has been trying new med after new med. Quote Link to comment Share on other sites More sharing options...
Nikki Posted March 1, 2010 Author Report Share Posted March 1, 2010 Nikki-A big question. Help me understand "dizzy." (Another member recently got annoyed when I asked this question, but the clarification is really important.) Does the room feel like it's spinning & won't stop- dizzy? Or do you feel so lightheaded that you will faint- dizzy? I ask because the treatment is quite different. You are being treated for the latter now. What is your BP and HR doing supine and upright? Are you also taking plenty of salt & fluid with the florinef? Any other symptoms?JulieWith me the dizziness feels like a very lightheaded feeling. I keep describing it to people that it feels like I'm on a boat. If I'm up to long, I start to get a disconnected feeling like I'll faint if I don't lay down. The 'boat' feeling is usually always there though, no matter what position I'm in. Just now my BP was 103/69 (and 81 bpm) while laying, 97/79 (and 109 bmp) while standing. Earlier today though, my blood pressure was 88/57 while laying..I don't remember what my heart rate was with that. It seems like my blood pressure runs on the low side most of the time, but I don't know if that's the problem, or it fluctuating so much is.Yes, I've been downing fluids. I drink about 96 oz daily. I have a 32 oz. bottle of Powerade and I just refill those bottles with water and usually drink two of those, which is another 32 oz each. So I'm definitely staying hydrated lol. I also make sure to get enough salt. I usually don't have any other symptoms. At times I will feel shortness of breath..but I could deal with that if I could only find something to make this dizziness go away. Quote Link to comment Share on other sites More sharing options...
Nikki Posted March 1, 2010 Author Report Share Posted March 1, 2010 (edited) Ah, I'm so sorry to post that so many times. I didn't think it went through and I can't figure out how to delete it. Edited March 2, 2010 by flop Don't worry, I've deleted the extra copies. You can edit and delete your own posts by using the icons on the right just beneath the post. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted March 1, 2010 Report Share Posted March 1, 2010 did you get your inner ear checked? you should see an ENT to figure out if that system is off Quote Link to comment Share on other sites More sharing options...
Nikki Posted March 2, 2010 Author Report Share Posted March 2, 2010 Yeah, I've had everything with my ears checked. They were thinking it could be something like that before. I had lots of basic hearing tests, caloric testing, ECOG testing, VEMP testing..and a CT scan because he thought there might be a hole in my ear or something..Everything came back normal. I think I'm just a big mystery to most doctors..lol. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 2, 2010 Report Share Posted March 2, 2010 Nikki-Sounds like you have lightheadedness- rather than dizziness. It's a pre-syncopal feeling. I get that too. Seems pretty clear that your meds are NOT working. Did you add them one at a time or both at once? If so, did one help at any point? Do they make symptoms better at all? I would guess it's time to consider trying a different med regimen. Unfortunately, yes, it seems to be a long process of trial & error for most of us to find something that helps. Have you tried an antidepressant? Many have good vasoconstrictive benefits and just help to further balance the autonomic nervous system. How about midrodine? How about compression stockings? Remember to try everything new all by itself for a trial period to really judge benefits and side effects. Small doses & titrate up with meds:-)Keep us posted on your progress. Julie Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted March 2, 2010 Report Share Posted March 2, 2010 i really agree with macks mom..lexapro (ssri) really turned my life over. I went from totally POTS chaos to working again and going to movies. I eventually got off it and did fine up till now Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 2, 2010 Report Share Posted March 2, 2010 Nikki,I was diagnosed almost 8 years ago and still have not found a combination that works well for me. That being said, my symptoms seem to change a lot and it is only recently that I have begun exploring "traditional" POTS medications and treatments. Before that, I was sent to many specialists who just tried to treat the symptom in their specialty and did not understand the big picture. However, for YEARS after my diagnosis I constantly told doctor after doctor that I felt like I was on a boat, I felt floaty, I felt like my head was not getting enough blood or was disconnected from my body, I was on an elevator, etc. they all looked at me like I was crazy and said they couldn't explain the symptom, even when I told them that I had been diagnosed with dysautonomia. Unfortunately, I don't have much in the way of treatment advice, except just to tell you to hang in there and keep trying things. Do not give up until you feel like yourself again, and don't let any doctor tell you that you are adequately treated if you still do not feel well! In the last year, I finally have less periods of time where I have the boat, floaty feeling... even if it is gone for a few hours of the day, but I will take that over nothing. It is like coming up for a breath of fresh air and reminds me that there is hope. I can't really attribute the reduction of the symptom to anything specific, but I know that I am headed for bad flare when the symptom goes back to being as severe as it was in the past. Just hang in there, keep going with trial and error, and know that I send support.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Nikki Posted March 3, 2010 Author Report Share Posted March 3, 2010 I haven't tried any antidepressants, or Midodrine. I started both of the medications I'm on now at once, then stopped the Florinef, just took the beta blocker alone..and now I had to add it back in (only a lower dose) because my BP was going to low. I did call my cardiologist on Monday to see what they say and they have yet to get back to me. About the compression stockings, I have been trying them. Only the ones that go up to the thigh, and the lowest compression. I did some reading on that and also asked the nurse to ask the doctor if I could go up in those. I think I might get the ones that go to my waist next time though, the thigh ones just don't seem to stay up where they're supposed to. Thanks again for the responses! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 3, 2010 Report Share Posted March 3, 2010 I would recommend you hang in there and live through it...it will pass!I think a touch of caffeine is a safer vasoconstrictor and would not want to use an antidepressant. You are in the worst of winter and sound slightly ready to fall into a potshole. Just get into your recharge mode however you do that. Yes, do use waist high 30-40 mm compression and it will be a challenge to get them on at first. Get into them early in your day, preferably right after you shower. After 20 minutes you will start to feel better. It takes a little time to adjust but they help some of us a lot!!!Just do not feel that this is outside the range of normal functioning for us with POTS. Keep up with the hydration and if it is a fast heartrate that is causing your dizziness you may also consider adding some potassium and magnesium to your intake. It was explained to me that when I have had spells of fast rates and some dizziness, I am burning through my body's storage of potassium. If I add potassium it helps me. The magnesium is added because it helps to retain the potassium.Whew, what we go through just to get through a day!I believe in trying small safe steps before going for the more serious big stuff.hugs,tearose Quote Link to comment Share on other sites More sharing options...
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