Hope

Have you been checked for Meniere's? Research Meniere's disease, or syndrome. Vertigo can be set off by a number of things including your salt intake, hormone changes, stress, allergies, a passing virus, or some people can be set off by sound.

This site has a lot of info. http://www.menieresinfo.com/index.html I notice on some other sites they have limited info. A good Ear, Nose, and Throat Doc should be able to help if you haven't already been to one.

My meds worked pretty quickly as far as the bp and hr control. Although you may notice that not all your symptoms go away so easily. You may still have triggers and sudden symptoms to deal with. If you know that ahead of time it will probably be less frustrating or scary. You may notice from reading posts from other's on different forum topics that most of us here have symtoms to deal with even with our meds. It sounds like you are on a good path to stability! Be well!

Dkd,

My TTT report reads " Tilt table testing reveals a vasodepressor type (one type of neurocardiogenic syncope) of response". Now my Neurologist says (in writing) that I have NCS with a POTS variant. At my last Cardiology appointment, my doctor said to stop taking my Beta blocker, to just take the midodrine with the thinking that my tachycardia is a response to my low bp. Some days I believe that is true, it seems to work. But other days my bp can be almost normal and I still have a heart rate well over 100 without doing much more than getting breakfast or taking a shower, and I take my beta blocker anyway (my primary prescribes it). I don't know if they would ever catch that on a TTT since it varies from day to day. I definitely have triggers for both my low bp and my high heart rate.

Thanks for posting this Alex!

Yes, my neurologist says my body overreacts to stress. I startle very easy. Somebody can just walk into the room I am in and I will jump. When our weather alert machine goes off I go through the roof, and I get the shooting tingles in my arms and legs. And like you say, even little things touching me can make me jump. It's very annoying. It's like my nervous system is just worn out.

Also, on the Dinet.org page there are "What helps" and "What to avoid" if you have yet seen them.

Yikes, you've got it bad On the home page of the Dinet.org website you should be able to navagate to a list of POTS doctors. It's a start. Then there's the biggies, like Mayo clinic, Johns Hopkins, Dr. Grubb, Cleveland clinic, etc... It just depends on what area you are in. You definitely need to take charge because regular docs tend not to pursue help for you. It's good that you have a couple people to help you. In your state of being, it would probably be impossible to do it on your own.

I've always been a light weight when it comes to alcohol, but I can't even tolerate a little wine anymore.

So glad to hear you got a diagnosis! That is always a relief. Keep us posted on your progress please!

Yes, I've seen one. I think Endo's can be very helpful to people who have conditions that they are testing for. For me they came up with nothing. They took a lot of blood, and I had already been drained of quite a bit at that time. My next ER visit is when they did the 24 hour urine, still nothing. I think it just depends on what you have. I believe my POTS is more autoimmune stemming from CFS and several viruses that I live with so the Endo was just a dead end for me. With that said, don't let them think your crazy if they don't find anything there! Like many doctors, this one was quick to point to "needing a phyciatrist" because she couldn't find what was wrong. How egocentric for them to think that if they can't figure it out that it's in your head.

I couldn't hold down a job right now as I am disabled. Since my cardiologist confirmed that I my symptoms have been that of POTS since I was a teen, I have worked most of my life with it either in flower shops, or as a secretary. It was always a struggle, but now it would be impossible. I was actually able to obtain a doctor's note this week just for Jury Duty, and I like Jury Duty. I like being part of the justice process. I was only on one jury before, but I loved it!

Anyhow, like Bebe, I also homeschool my last child. I also have a small home bussiness I am currently resurrecting. I had started it before I became disabled. I do basic sewing alterations and repairs. I also started selling my wares on Etsy, but that is a slow process as I have not started advertising for that. I am trying to get my shop filled up first and it takes time, and ENERGY to make things. In the future I would like to give home school lessons for basic sewing & crochet. I have a curriculum worked out for it, and I had been practicing with giving the youth of my family lessons before I became disabled also. I am hoping by next year to offer those classes to my home school groups. I figure if I never get better, I can do these things when I am up to it. And if I get better, I may be able to use my sewing skills to get back into the work force.

I have taken it but not for some years. I know I wasn't able to drive when I took it though. My husband used to take it a lot. He has many symptoms with and without meds so I couldn't tell you how it really affected him. Also when my son was a baby, he cried pretty much non stop. When they finally decided it probably wasn't just colik, they gave him Levsin drops and be relaxed and became very pleasant!

Awe! He looks so sweet!

Yes, but it's random. Not every night. It can happen day or night for me. Tasting usually in the day time. Smelling things that aren't there, day or night. I guess I thought it was a normal occurance that everybody has. I really don't know what's normal and what's not anymore.

Hi Imapumpkin,

I'm on a low dose of midodrine also. I hate to take meds because I am so sensitive and was terrified to start taking the meds that I'm on when I started. In fact I'm terrified everytime they refill them because I'm afraid of getting a bad batch! Anyhow, I have had almost no problems with midodrine. I take a half a pill at a time of the 2.5mg and take another half as needed through the day. I have a ligament in my chest that swells for different reasons and when I take a whole midodrine, this will swell and cause me pain. So that's why I do half at a time. But other than that, I have had no adverse reaction to midodrine. Some days it's just not enough and my BP just hangs low and since I won't take any more I get stuck having a low day. I would not play around with your dose though without talking to your doctor. My doctor has approved what I do for me. I haven't changed to any other meds to boost my BP because I am so sensitive, I just don't want to deal with changing right now.

I hope you do well with it.

Hope

Hi Spinner,

I have been keeping myself well refrigerated this summer. I'm slightly farther north than you, and you're right with all the lakes around, 90's and humidity is not the picture you get when you think of the north!

Now today it's cool for some reason and my BP is 100/70 without taking anything to bring it up It's going to be a good day! I have always felt better in the fall, cool air, yet the furnace hasn't gone on yet, and of course at that time of year the allergies have subsided.

I think I may also look into a cooling vest for the warmer months. As it is, when I go out I always throw a wet cloth into a plastic bag to take along. When I start feeling wacky, the wet cloth on my face and neck make me feel more coherent. If it's real hot, I bring an ice pack for my face and neck, this snaps me back pretty quick.

I hope you find some relief.

Hope

Thanks for the encouragement . I think I will ask my son to take me places in it this week, and maybe by the weekend I will try church with the wheel chair. I've just been in this house way too long waiting to get better!

So sorry to hear you are so miserable! I hope it passes soon!

Some times I use a wheel chair and sometimes not. I find it much easier to get through a store in a wheel chair due to what I think is sensory issues dropping my bp. I still have the sensory issues in the wheel chair, I get weak, brain fog, and dizzy, tunnel vision, etc but do not have to worry about falling over, tripping, dropping things, or having to leave without buying anything because I think I might pass out before I get through the register. The wheel chair is good for this situation. Then, in the evenings on days that I am feeling well, I can be seen out watering my flowers standing on my own two feet, sometimes even walking to the corner and back or across the street to the neighbors house. Certainly I understand now why this is, but of course other people do not. I am very insecure about this and it causes me more anxiety to wonder what people think when I can walk at one part of the day, and not another? I REALLY want to go back to church more regularly. As it stands now, I only go when I think I can make it on my own two feet through the whole thing, which has been once or twice since Easter. I'm sure I can make it much more often in my wheel chair, but I'm too embarrassed. Not of the wheel chair itself, but that people know that I can walk and of course they don't understand why I am using it sometimes and not others. I guess at some point I'm gonna just have to let people think I'm crazy if I want to do the things I want to do. I so tired of staying home, when I could get out more in my wheel chair.

Anyhow, I just thought I would share because I figure that there must be others at the same point in this illness.

Thanks for posting this Alex! I need motivation to exercise. I have a yoga video I started doing, and then it's gone to the wayside. I will have to check out the webpage they cited on the video. My body seems to be at the point of being ready to start some regular exercise again.

We do grow mold in our window sills. I have to bleach them every so often.

I don't lie on my belly due to the pressure on my face, it's always been that way. It's uncomfortable.

I DO NOT feel pressure on my face when I stand up.

I do have mercury fillings and have wondered if they might be compromising my health. Let me add that I have them because my adult teeth came in with much missing enamel. The dentist when I was about 9 put bonding on my front teeth and mercury fillings on my back ones that were missing enamel. I think the missing enamel was already a sign of a bad immune system. I had a bad virus with a very high fever (hong kong flu I am told) while my adult teeth were forming in my gums.

I am NOT a vegetarian or vegan, although I probably eat less meat than regular carnivores.=)

My symptoms first started as a teen, approximately 30 years ago. It didn't disable me until 2 years ago.

Dave,

I don't know about withdrawals but as far as the headaches, maybe they could just switch the beta blocker? When I was first diagnosed with POTS I was given a beta blocker that gave me bad headaches. I wish I could remember which one, but I wasn't keeping track of everything yet at that point. Anyhow, they switched me to metoprolol on a low dose and it works pretty well. No headaches. I'm so sensitive to meds that I go low-dose on just about everything. If I get regular doses I usually have just as many symptoms from the meds as I do the illness. So I'm only on 2.5mg, and I do well with the heart rate. I was actually taken off if it recently to see if my low bp would jump up, but it only works on some days like that. Other days, I need the bb, so I take it as needed now.

I hope you find what works for you. So glad to hear you are out walking and biking.

Maybe you could dig up some articles on the subject and mail them to your mom? I wonder if wearing a mask would help? I use one for outdoor allergies, and have been tempted to use one when I'm with a lot of people, such as at church where there is always perfume. Right now, I just try to sit in back away from the thick of it. I don't know if a mask would work the same way though as with pollen.

I've been on both sides of that scenario and I get how people just don't understand. Some things you just can't really understand until you are in the same position. I will be interested to see what other suggestions there are because I can't use antihistamines any more. I'm even sensitive to those

Ashley,

I'm so sorry about your father. I will be praying for your family.

I have CFS and get sore easy. I also have a spot in my chest that swells, especially when a storm is coming or just rainy days, or if I do to much in a day it swells. In past years my pain would get quite intense all over, even my skin hurt. I lived on motrin. But it seems with my diet changes (anti inflammatory type diet) my pain is much more tolerable. I rarely take pain reliever now, although I use a heating pad quite often for my soreness,especially when that thing in my chest swells(I was actually given a name for it by an ER doc when I went in for chest pain years ago, but I can't remember what it was). My pain used to wax and wane depending on inflammation. Such as around my period, it was like bad all over flu aches. I really believe my gluten-free, low dairy diet has helped the dramatic change. I also drink tart cherry juice every day and almond milk.Tart cherries and Almonds are suppose to be a good anti-inflammatory foods. Have you been on the CFS websites? I know it all overlaps, it's hard to figure out. I think I mentioned in another post that the Doctor that diagnosed mine looked for old viruses still in my blood, besides my symptoms. I'm not sure if that's how they all do it, and I don't know how they diagnose Fybro.

Hope you find some answers.