KristaKupcake

I have not tried Trioral but I’ve had to take bitter tasting liquid contrast for CT scans many times. Lemonade and pink lemonade are great at masking terrible tasting medicine. Perhaps that may help you? I think cranberry juice is fairly strong too. 

Good luck! 

1 hour ago, bombsh3ll said:

I always get mine. The last thing you want with POTS/dysautonomia is the flu. I've never had any side effects from the vaccine. 

B x

Thank you for the input. I usually get a little tired after the vaccine and a sore arm but that is about it. I think I will go to a clinic / pharmacy on Monday.

There were 2 days that I did not exercise and then the following 2 days I did not feel well. Maybe I just need to keep exercising to keep feeling well. I’ve been sticking to mild / moderate (for me) exercise for about 25-30 minutes a day. I do the treadmill and some squats/crunches/weights (light). Sunday can be my rest day at times. I always feel wiped out for the rest of the evening after exercising but the next day I feel okay. 

Does anyone else get the flu shot? I haven’t gotten it yet this year and normally I get it faithfully every year. I’m kind of anxious about getting it but I don’t want to risk getting the flu either.

Just wondering if anyone gets the flu shot each year? My fiancé has asthma, as well as the rest of my immediate family. I normally work in the health care field myself and I have a past history of cancer so normally it is a good idea for me to get it. 

Krista

10 hours 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

So far I am undiagnosed with anything (likely POTS). I’m still waiting for a scope to be done. Initially my first symptom was intense nausea and fatigue. They treated me for a possible ulcer and initially they thought I had a stomach bug. I lost about 20 pounds in a month and a half due to lack of appetite and nausea. 

After they treated for ulcer my stomach started to slowly improve. I still get mild nausea from time to time (usually in the mornings). I avoid /limit foods that could cause heartbearn or stomach upset. I limit dairy as well. I was having trouble initially with diarrhea and some days I’d have constipation. Now I’m more regular but can still get looser bowel movements. 

All my GI symptoms started at the time my POTS symptoms started so I wonder if the ulcer is what triggered POTS in my case or if it was POTS all along. 

I still try to eat smaller portions more frequently to make digestion easier. I’ve gained about 5-7 pounds back now. I always have mints and gum around to help with nausea and my dizziness (gives a distraction). Licorice may or may not help the stomach lining. 

I find I have nausea and digestive problems mostly in the beginning of the day. My appetite generally improves by the evening so I eat smaller amounts more frequently in the morning / afternoon and I can eat a bigger meal at dinner time (though not a huge meal). 

I always have mints and gum around to help nausea. I’ve experimented with licorice tablets to help heartburn symptoms (they help over time but aren’t fast-acting). Gaviscon (mint) tablets have helped for acute heartburn symptoms. I tend to avoid foods / beverages that make heartburn flare up. 

Smoothies and almond / soy milk have helped. In the beginning I relied on Ensure high protein vanilla drinks to help get extra nutrition when I couldn’t handle eating food. It isn’t the best but it isn’t the worst either. 

I used to suffer from migraines but since my POTS symptoms started I am having less headaches thankfully. When I do get them, I try Tylenol first. If that doesn’t do it then I’ll take Advil. Advil works the best but I find it can be hard on my stomach so I limit the use of it. 

I have a sensitivity to dairy but I sometimes will still eat Greek yoghurt and older cheeses for some quick protein sources. I find it depends on the day.

I’m struggling with gagging and dry heaving so I plan my foods around that. I’m not sure if the licorice tablets are making it worse or not so I’m trying to figure that out. I had cancer treatments to my neck/chest years ago so I may be having delayed issues from that (sometimes I cannot swallow food temporarily too).

11 hours ago, StayAtHomeMom said:

Do you have a gas heater?

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’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. 

Jen I’m so glad they figured this out when they did so you can be treated for PE/DVT. I am currently on Xarelto for small PE bilaterally in my lungs. We don’t know how long they’ve been there because I didn’t get the typical symptoms associated with PE. It was by fluke that we found them (7 ER visits never found anything wrong but my family doctor ordered a CT and bam - PE diagnosis). 

I’ve been on blood thinners since mid September now (this year). I have probable POTS (the cardiologist did not want to ‘offically’ diagnose me - yet). Thankfully I do not have the DVT but I do have very sluggish blood flow on my legs (noted on the ultrasound I had on them). I try to walk a bit each day and try not to stay sitting or laying down too long to keep my blood flowing. Slow blood flow can put you at a higher risk for DVT. 

There is a a history of blood clots in the women on my mom’s side of the family and I was traveling in August across the country. So I had 2 risk factors. I have a hormonal IUD for birth control / period control as well but it is progesterone-only (no estrogen which is the greater risk factor for DVT’s). I’ve thought about tubal ligation but I’m scared to have any surgical procedures now that I’m dealing with POTS/dysautonomia symptoms. The IUD is not pleasant but it was the best option for me to reduce hormones and also help lessen my periods / prevent pregnancy. Of course, pregnancy isn’t much of an issue now that I’m not having sex since this illness started :(. 

Krista

On 2/4/2011 at 5:23 AM, toddm1960 said:

 

Bananas remember the first rule of dysautonomia, what helps half of us, makes the other half feel worse. I'm in the sympathetic overdrive group so any diolation helps me. ( I'm starting niacin this week also ) You do bring up a good point though for the hypotensive part of our group, be careful with the amounts you start with. Start slow and work your way up.

This is so true. I tried about 2 weeks of using ReMag to see if magnesium would help my symptoms. I did notice at first my energy seemed better and it did not affect my sleeping patterns. Unfortunately I started slowly becoming more dizzy, weak and uncoordinated. I went to the doctor and my blood pressure dropped to 80/60. I’ve always been on the low end of normal (111-117/70 is my normal) but I’ve never dropped below that!

My blood pressure drops further when standing up as well - no wonder I felt awful. I’ve since increased my sodium, quit the ReMag and take a multivitamin instead. My blood pressure after 1 week of these changes is now 104/80 (drops to 94/80 upon standing). I feel a little better but still not great.

Just fair warning to everyone to be very cautious with magnesium - I think it may benefit some but may harm others like myself.

On 10/25/2018 at 11:56 PM, StayAtHomeMom said:

The only thing similar I get is I have some seriously poor circulation. Just crossing my legs can make them fall asleep. I wake up with my hands asleep. There are times I will lay on my left side and my right hand will fall asleep or vice versa. It has been progressively getting worse since before my POTS reared its head 3 years ago. Had a nerve conduction study done and it isn't my nerves. Doctors seem to just dismiss it. 

This describes me perfectly! I am a side sleeper so it is difficult when you kee waking up to your limbs being numb and tingly. I find myself constantly changing positions to off-set this but it doesn’t always help. I feel dizzy or like I’m falling if I lay flat on my back. Laying on my stomach isn’t always possible due to a nauseated feeling. At least we are aren’t alone going through this! 

On 10/25/2018 at 11:41 PM, sjoh197 said:

I am new to the forum and came to ask about a symptom I have that I don't see mentioned often. 

On a regular, almost daily basis, my arms, legs, and sometimes just toes will feel a major discomfort that I can only compare to the uncomfortable feeling that you get when you have a blood pressure cuff on and it's really tight. Not the actual pressure part, just the uncomfortable "arm below the cuff" part that feels like it's being strangled and has a noticeable pulse.

Does anyone else get this?

At night when I am trying to go to sleep I get a feeling like this in my lower legs and often my hands. It really makes it hard to fall asleep! For years I’ve struggled off/on with restless legs (mostly if I’m not sleeping in my own bed) but this is a different sensation. It is like intense pressure in my limbs and sometimes I get ‘numbness’ at the same time. I wear compression socks throughout the day but I take them off to go to bed. I’m not sure if that is why? Maybe I’m feeling blood pooling? Either way, I understand the feeling. Recently my symptoms have gotten worse re. My blood pressure (80/60 last week). I tend to flex my calves throughout the day just to keep blood flow moving - I’ll do that while laying in bed as well to try to get rid of that feeling. I wiggle my fingers as well or clench my fists too. Hopefully this feeling will not last (though it is one of the least bothersome symptoms I have). 

Good luck! 

18 hours ago, Mbritt724 said:

I’m so sorry to hear you’re going through all of this, the beginning stages of navigating all the changes can be so overwhelming! I know you mentioned salt and fluid increases already, but two things that I’ve found life changing for both of those things have been the Salt Stick Vitassium pills (got mine on amazon) and Drip Drop brand electrolyte packets (I drink 1-3 a day). Before these things I was already drinking tons of fluids and eating more salt, but both of these brands have a perfect combo of electrolytes & potassium/sodium.

Compression stockings, as mentioned already, are helpful and even just forcing yourself to walk or move around (I know it’s hard when you feel so “yuck” ;-/)...  I also found that sleeping propped up seems to help tremendously. I hope you’re able to get into your next appointments soon for continued testing - I know the waiting can be horrible! 

Thank you so much for the suggestions. I actually ordered the Salt Stick chews - they should arrive tomorrow so I can try them out along with the gotu kola and Licorice pills. 

Today I actually have been up and around more than typically. I just get the bad dizziness after I am at rest / sitting. I have to distract myself with my phone until the dizziness / heart beat settles down. 

Still drinking lots lots of fluids and trying to eat more, though I struggled with loose stools today too (TMI I know). The headache is still with me today as well, despite all the fluids. I took 2 500 mg Tylenol yesterday and it didn’t touch the headache. No rain or low pressure either so I’m not sure why I’m having these headaches.

I’ve been noticing that as soon as I wake up in the morning I have the intense urge to pee and I get shaky after I’ve been upright. Not sure if that is from excess adrenaline or what. My heart rate usually is elevated once I’ve woken up Too especially trying to get upright/even sitting. 

The daily struggles continue...

9 hours ago, Pistol said:

Dear @KristaKupcake - I am sorry you are experiencing all of this. I know - as do many others on this forum - how scary this all is, especially when you are first starting out on this journey. Ask your doctor if you could try Antivert ( meclizine ). This was prescribed for me when the dizziness is severe and it helps. I also agree with @Mbritt724 about the compression stockings. And please do try to get up as often as your symptoms allow. One of the most common consequences of these symptoms is that we end up lying down all of the times because it makes the symptoms bearable - but it WILL make them worse. The more we can be upright ( even sitting ) the more it will aide in resuming orthostatic tolerance. When I am bedridden I do leg exercises ( lifting legs, bike riding movements, touching the right knee to the left elbow and vice-versa ….) and I try to sit up and lift 1 lb weights in all directions, you can use water bottles if you have no weights. All these exercises are easy to do but are very effective for your circulation. --- I wish you only the best, be well!!!!

Thank you so much for the suggestions! I will look into the medicine. 

23 minutes ago, StayAtHomeMom said:

My pulmonologist recommended a half a pill of over the counter dramimine to help my dizziness. Not sure why it helped but it did at that time. Check and see if it is safe for you to try. I am sure you are at the point where anything is worth trying. 

I live in the US and even here POTS isn't well known. I had to fight every step of the way to get my diagnosis. Even now when I meet a new doctor or nurse they will ask what it is. 

When my POTS presented it started with a breathing issue (still have 3 years later) and doctors kept saying it was asthma. With perfect PFTs they kept giving me inhalers and breathing treatments. They all made me feel worse. I know now why but at the time I didn't realize it was causing my HR to be worse. 

Things will get better, especially when you find that one doctor. It took me over a year but I found mine and am now doing a lot better. Even with my flares, I am still better than I was 3 years ago. If you don't agree with your doctor, find a new one. They work for you, not the other way around.

Good luck and I hope you feel better soon. 

StayAtHomeMom I have tried Benedryl but it doesn’t seem to work for me :(. I’ve been researching so much to try to help. 

I’m hoping to be referred to a cardiologist here soon. It just never seems to be soon enough. Here sometimes it can take months to years to be referred for tests / specialists. Thankfully I have some connections through working at the hospital for some things but not the right connections for what I need. I haven’t actually been to work since August (on short term disability currently). 

Thank you so much for replying 

Thank you for the reply Bombsh3ll. It means a lot. I definitely have been suffering from the nausea and weight loss. I find I have no desire to eat until my stomach starts feeling more unwell / heartburn-like. The ironic thing is I get nauseated once I get hungry. I’m wondering if the propanolol is causing some blood sugar drops when this happens.

I’ve lost about 20 pounds since this all started. I thought it was just a stomach bug when it started but I think it was the start of this possible dysautonomia / POTS.

Most of the day I am bedridden or sitting down/ in a recliner due to the dizzy feelings / heart rate. Of course, that doesn’t make the dizziness go away either. I’m ****** if I do, ****** if I don’t.

At night I’ve been trying to exercise to make up for it, since I feel slightly better at night. The weird thing is the propanolol has reduced my heart rate from climbing very high but it still pounds and causes my vision to be distorted by the pounding. 

I’ve actually ordered more Licorice Root - this time without the removal of the glycyrrhizin. I’m hoping that will help. I’ve also got some gotu kola on the way to try as well. There is a family history of varicose veins so it might help. 

I’m on blood thinners currently for old / small pulmonary embolism that they found by accident the beginning of this month. They aren’t big enough to cause my symptoms though and it certainly doesn’t explain all my symptoms either. Of course, this is what most doctors are focussing on. 

I haven’t gotten referred for a TTT yet. One night in the ER I did a poor mans TTT with the nurse - she was actually familiar with POTS. That night my resting heart rate was 68, sitting up put it in the 90’s and standing made it spike to 125 immediately. Unfortunately the doctors were focussing on others things and didn’t want to discuss it. So frustrating. The nurses have all been so sympathetic and helpful while the doctors are either unfamiliar or uninterested. 

Thank you for sharing your story / experience. 

Hi everyone,

I am new to the forum. I have not officially been diagnosed as of yet but I feel I have a form of dysautonomia / POTS.

I became suddenly ill August 15 (nauseated, extreme fatigue) which progressed into having tachycardia upon position change  - especially when standing. My heart rate goes from 70-125+ BPM and the pulse stays elevated until I lay down. I am in Canada and I have been to the ER a few times due to the tachycardia and dizziness (near constant). ECG's are normal, bloodwork is normal, etc. They do not seem to know anything about POTS here. I'm awaiting a cardiology referral and 24-HR heart monitor, among other tests. I have nausea every day and a lack of appetite (worse in the mornings). I am getting frequent headaches (before all this I suffered from migraine headaches). I feel somewhat better at night. But the dizzy feeling is not going away despite making sure I am well-hydrated, increasing my salt intake, eating small meals throughout the day, etc. 

My question is do you get dizzy from your own heart beat? I've been taking very low dose propanolol (5 mg a day) for the past week which has helped reduce the heart rate spikes, but it has not helped the dizzy feeling. When I am upright I do not notice it as much, but as soon as I try to sit and relax or lay down, all I see is everything going side to side in tune with my own heart beat. It is so disorienting! I am hyperaware of my own heart beat. I also get a bit of a more normal dizzy feeling (like I'm falling or off-balance) off and on in any position, but it comes and goes randomly. If I lay down for an extended period of time it seems to calm my heart down slightly more and almost helps the dizzy feeling. 

I am desperate for help but feel like I am not getting any help form my doctor. Is there anyone experiencing something like this? Has anything helped you? I am currently using DGL liquorice root for nausea. I tried using some huperzine A the last 2 days but I don't think it did much for me.