StayAtHomeMom

9 hours ago, misseb said:

Thank you so much. It's hard not to feel like you're going mad after a moment like this. I'm finding this journey so lonely and today was another blow. 

I was referred by my POTS specialist to her and she has knowledge of EDS. I couldn't help but feel that she took pleasure in saying all this. Quizzing me on why I thought things were a trigger in a horrid cruel way.  She was even saying that rapid gastric emptying is not possible with POTS and debunking things my previous GI Prof had diagnosed - Prof Aziz - who has multiple papers and even personally raises money for EDS. I can't continue to see him as my private insurers have pulled out. 

I am intolerant of all high histamine foods even down to tomatoes, and fermented foods are a killer. I have been tested for histamine intolerance by a mast cell specialist immunologist but it came back negative in the histamine tests. But it's often hard to test for histamine intolerance. I'm wondering if histamines simply trigger my POTS. Garlic and onion leave me in bed the next day shaking and with blurred vision. She again said she doesn't see how that is possible. 

 

Good advice - I think I'll go back to my autonomic unit and ask to be seen by someone else.  

Rapid gastric emptying is a good word for that. My boss (has a degree is the medical field) said it takes 24 hours for food to go through you. No way can you eat something and cause diarrhea 15 minutes later. My argument for that is that the food hits my stomach and my stomach sends an emergency signal to empty my bowels.

This has gotten better for me since I started the Keto diet. Not sure why the carbs would make that big of a difference because I don't have celiac. But it has been my experience it has been amazing. Unless I eat a lot of the sugar free chocolates. 

7 hours ago, Derek1987 said:

Does your heart skip beats?

My heart has always skipped a beat. About once every 3 years or so. Makes you take a deep breath. Sometimes cough. When my POTS presented I started skipping a beat at least once a month. I thought the skipping was a heart palpitation. And it is but I also found out anytime you feel your heart beat fast or slow it is a heart palpitation. And that happens daily without my meds. My metoperlol really takes care of that for me. 

My major symptom is an issue breathing (nothing wrong with my lungs) so the propranolol that is the usually go to medication made that worse so they started this cardiac specific beta blocker and it has done wonders for my HR and heart rhythm. 

My midodrine help the rest of my symptoms. 

7 hours ago, Derek1987 said:

Thanks for your reply. My autonomic dysfunction specialist doesn't seem to think it's pots from the tilt table test. But my tilt table test was only like 5 mins and I've read on the internet where they take ones a lot longer and even give medicine or something. The tilt table did show my heart rate was dramatically different depending on my position. But my blood pressure was high the whole time. Yesterday when I got to the doctor my blood pressure was 115/85 sitting down. When I nearly hit the ground in Walgreens later that day, as soon as I got home I took my blood pressure and it was 150 something over 109 standing up. Laying down it dropped a few points. My heart rate dropped by about 50 beats. My blood pressure is all over the place and is never consistent. I guess time will tell on what's going on. Thanks again for your reply.

You are supposed to be upright up to 45 minutes unless you faint. Injection of medication is individual. I had it twice and neither used anything injected. 

8 hours ago, Derek1987 said:

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences. 

I am currently considering applying. Right now I am working on getting everything I can diagnosised to help my case. I have an appt this month to get my ADD and OCD diagnosised to help them see the whole picture of what I deal with. I do currently work part time but if my boss wasn't so flexible I can't see me being able to work. I can text the morning of and not come in. No other job will offer that for me. 

Welcome to your 30s. I had a similar thing happen. It is like I hit 30 and my body fell apart. Be patient it will get better. Try not to compare yourself to before you got sick. Take it one day at a time. And there are multiple types of medicines that can help. Personally I take metoprolol and midodrine to help me. There are other medication combos I have seen people use on here. Also try to listen to your body as much as possible. There is a lot of good advice on here as well

Have you tried being allergy tested? There are multiple types of allergy tests and that may be a better route than the GI doctor. 

51 minutes ago, lieze said:

I think I need to just come right out and say it. My husband has bipolar disorder so the stress I experience in my family is above average. When he is asked to do anything that is an inconvenience to him he blows his top. Not only does he refuse to help he has a meltdown. Will scream yell threaten to leave attack me verbally. It gets nasty. The one time not too long ago maybe 6 months I had asked him to go to the grocery and he threw a huge temper tantrum and threw the list at me. So what I deal with goes beyond irritating habits. As it is we are only together about 48 hours per week. He is gone that much either with work or even when he should be home he takes off and does other things or as I mentioned goes and goofs off at our other house. I have raised my kids on my own for the most part. So nothing about my situation is normal. In some ways the only thing that will solve part of the problem is just getting away period from all of it but I am not willing to desert my kids. They didn't ask for any of it. So I try to get through the best I can. I guess if I could just tolerate all his outbursts I could just keeping pushing for everything I can get from him but I am so sensitive and when he goes off on me it impacts me and my health. 
When he is home for a variety of reasons mainly my health I need all the help I can get from him and in reality he is willing to spend very little time that way.
I was hoping when mom died dad would pitch in and that hasn't really worked out either. So blah. It's just muddle through it for now.
My focus is and has been for years to get my kids raised. At my oldest son's graduation I was ready to get up and do the happy dance it was like one down three to go and then maybe I can be free of this h***.

I am sure that is not the best situation to be in. 

28 minutes ago, lieze said:

And I also don’t want it to seem that I just become overly emotional every time things don’t go my way. 

The workload number one can be huge and I can feel very alone in it. My requests for help get dismissed etc. Number two I am okay with things not happening quite the way I hope so long as there is a reasonable explanation as to why and a plan for resolution I could be satisfied with that. But the feeling of getting no where with same issue same result is frustrating. Those are the elements that are frustrating to me.  I could deal with a plan and a timeline that would take into consideration all resources and everyone’s well being. What I don’t like is continually being dismissed. I am not sure anyone would be satisfied with that scenario. 

Have you considered taking a vacation? Somewhere you don't have to do much unless you want. Just a few days to rejuvenate yourself? I never thought it could be so nice but I did a small vacation with my mom some years back. 4 days of no kids or hubby. No responsibility and I could do what I wanted at my pace. I missed my family those four days (first time I had spent more than 24 hours away from them). But when I got back I felt back to my old self. I felt like every little thing they did didn't bother me as much. I missed them and their irritating habits

33 minutes ago, lieze said:

I honestly have difficulty with the amount of talking the therapy sessions require. I cannot talk at a normal pace for the length of time required to give her information without starting to feel very lightheaded. I really end up getting flabbergasted in the office. 

See if she would be willing to read a journal to get things started so that you don't have to exhaust yourself trying to tell her everything going on. Also 1/2 tablet of dramimine (the OTC motion sickness med) could help with those dizzies. 

I would try a low dose beta blocker again. And there is also midodrine to help raise your BP. These are the meds I take and it controls my BP in all positions, and keeps my HR from shooting up as often. Occasionally I get breakthrough tachycardia but just walking and driving to the doctor's office I can do. I drive 3 hours one way to see my specialist by myself. 

I think if you could get enough assistance to be more independent your stress levels would come down and you might feel better. Whether it be a person or medication. Then you won't have to rely on your hubby or kids and won't be so upset when something doesn't go your way. 

Out of curiosity have you had therapy for yourself since you were diagnosised?

Also my sister in law sees a specialist out of state because her state does not have a specialist for her MS. It took some red tape to go through but Medicaid does cover it for her. 

I am curious did you have an epidural when you had your child?

Try an internist or cardiologist that specializes in heart rhythms. EP cardiologist? I can't remember what they are actually called or what EP stood for. 

I am sorry you feel used. Honestly I have seen people do what you do and not be disabled and still can't handle it. 

Personally I would tell them all to go take a leap. I know they are family and that is a big thing to me but if you can't do it then you can't do it. You have to stay within your limits so you can function. 

As a cheat for shopping, Wal-Mart and a few other grocery stores deliver or you can order online and then just pick it up. They even load it into your car. 

These episodes sound panicky. I get something similar. It looks like a panic attack but my mind is clear. Mine is noise related. Sirens from police and fire trucks make my body freak out. Do you take any meds?

11 hours ago, blizzard2014 said:

I do. But am on Medicaid and it is hard to find a good doc. I have been looking and looking. I would even pay a few hundred dollars to see a decent doc. But this episode just hit and now is calming down and my BP is normal. So, who knows. I can never predict when this will happen again. I know for sure though that if I tried to exercise, I could probably force one of these episodes on. 

I am on Medicaid and I had to wait 6 months for my specialist but I found good doctors that were willing to learn and was diagnosised before I seen the specialist. 

I have never gotten it. I would ask whoever is giving you the shot if it is a live virus. If it is I would see if you can get one without it if you are worried about your immune system response. My sister in law used to get them every year but then she would get the flu. If she didn't get the shot she didn't get the flu. It happened for over 10 years. So now she just doesn't get the shot. 

It sounds like you may need to find a new doctor. 

Propranolol is the first medication used for POTS. Small doses is also used for anxiety and tachycardia.  And sustained jump in HR is what they are looking for. That being said moving usually brings it down slightly. 

Everyone on this forum has been where you are (regardless if you actually have POTS). Unknown symptoms and no obvious cause is pretty normal here. I am sorry you are having such a hard time. If you are concerned about any symptom I would go to a doctor you trust. I would also do a poor man's tilt table for at least a couple days and show the data to your doctor as well. 

9 hours ago, jklass44 said:

Good to know I’m not the only one. Did you ever investigate a possible food allergy or intolerance? I’ve been veggie/vegan for over 15 years so I guess it could possibly be soy or gluten related, but it’s only really flared this year so...

I had a full allergy test, scratch and injections, and the only thing that came up was 2 different types of fall molds. I don't think it is soy. Gluten could be a possibility but I don't think it is that either. I tried a low carb tortilla and if I remember right it was gluten free and it messed me up for a day. So I just avoid all the flour now. I want to try almond flour but it is too expensive and I have 2 teenage boys in my house

7 minutes ago, jklass44 said:

Were the majority of you guys diagnosed with these GI issues by a doctor or is it more something you just experience and treat yourself?

I’m just asking because I’ve been having awful GI symptoms throughout this year (newer for me) yet my cultures and ultrasounds keep coming back normal despite the constant abdominal pain, diarrhea, nausea, bloating, etc. It’s super frustrating and I’ve lost so much weight

All of my tests come back normal. So I treat mine on my own at this point. Since I started my keto diet (to help lose unwanted weight) I have found my GI issues have mostly resolved. It is a very nice unexpected thing to happen. 

14 hours ago, KristaKupcake said:

No I have electric baseboard heaters. There are 4 of them in this room (living room/dining room) and 1 in each bedroom. I live in a 2 bedroom/2 bathroom apartment. I keep the heat lower so it isn’t too hot (18 degrees Celsius / 64 degrees Fahrenheit). I keep the bedrooms cooler at 12 Celsius / 55 Fahrenheit). At times I will lower the living room a bit cooler depending on how I’m feeling.

I was hoping maybe it was a type of heat in the winter causing issues but I guess that doesn't work. 

20 minutes ago, KristaKupcake said:

I’m feeling more exhausted this week. We’ve recently had to start turning on the heat here due to the cooler temperatures. I’m noticing I’m feeling more fatigued / tired during the day than I usually do.  A few weeks ago I feel a bit of energy around 1-2 pm but not so much now. I’m still continuing to do some exercise in the evenings when I feel better but it has been a bit of a struggle lately. I was waiting in a doctors office today and I got so tired. I started moving my legs and pumping my calves to get my blood flowing and to keep from getting too tired. Getting up in the mornings send to be harder too - I’m fighting just staying in bed. 

Do you have a gas heater?

2 hours ago, blizzard2014 said:

I do drink really strong coffee twice a day because it helps with my fatigue. I won't give that up though lol. I'm good today. I found the current proper balance of meds. 10 mgs of Lisinopril has lowered my sitting BP to 114/80 and my standing BP to 117/90. That little number is still trying to creep up on me, but as long as it doesn't go over 95 when standing and the higher number is good, I'm good. I can deal with that. Lets just hope the doses don't need to be changed again. I know when summer time comes, the doses will need to be changed as heat makes everything so much worse. I wish I could give up the coffee, but it is the only thing that keeps me from being drowsy all of the time. 

Can you try different types of caffeine for your fatigue. Like soda (it is half of what coffee is)? Just curious. I know fatigue is awful but your blood pressure could so many worse things. 

My question would be did they run your tests while you were on the beta blocker. That would definitely skew any tests. I would definitely go back or see another. My specialist was dismissive at first but as I got to know him and him me he is much nicer now. He re ran all of my testing so he knew it was done right and then confirmed my diagnosis. He even agreed to see my 15 yo son to test him because it can be genetic. I almost didn't go back after my first visit (it is 3 hours away one way) but he has made it worth my while to see him. 

1 hour ago, blizzard2014 said:

I'm just on the Lisinopril right now StayAthome. I don't need the Clonidine. I used it two days ago though to knock down the spike because Amlodipine didn't do anything. Yesterday the Lisinopril dropped my BP too low so today I am on a lower dose. The BP keeps on changing on me. My ideal control is sitting 109/75 and standing 120/89. That is the sweet spot I used to get with 20 mgs of Lisinopril and .2 mgs of Clonidine. Now I'm getting 88/65 sitting and 100/80 standing. I need to get the sitting BP up a little bit higher without raising the standing BP too much. I wish there was just a set it and forget it pill. Take the pill and just get on with life every day. Sadly, there is no such pill and I need to keep on finding the sweet spot with meds. 

Are you doing anything that could be upping your BP, like smoking or caffeine? Even some medications.  My hubby's blood pressure came way down with the lisinopril and no caffeine. And it is staying pretty steady. 

In theory if you take the meds like you are supposed to it will help you get on your feet to help you feel better. 

Have you ever been put on something just to bring down your BP. That seems really high. 

Yea I have that problem. I rebelled for a while because I hate taking medication but I have gotten to the point of I don't have a choice. If I don't take it I feel bad and I am tired of feeling bad.