gackedo

I just spent some time at altitude and it definitely affected me. They say to stay very hydrated to help with symptoms but I still got winded when I tried to be active. 

Smelling things that aren’t there, esp. smoke can be a symptom of a significant neurological issue. I would see a neurologist ASAP. 

I’m 61. Still have POTS. 

I hate that low blood sugar feeling. My cardiologist said the jittery feelings and sweats I was experiencing was an adrenaline surge from being upright. But I started checking my sugars and they where anywhere from 39-45!  And they happen so quick.  Pretty scarey  

@Heartbroken-I’m guessing you are on Tricare Prime. If you can switch to Tricare Standard and buy a secondary insurance, the cost is about the same but then you are not required to get referrals from your PCP.  You can refer yourself.  Plus more civilian doctors take Tricare Standard than tricare Prime  

I have been diagnosed with a vocal cord dysfunction. For me I have hoarseness, difficulty swallowing and frequent chocking. My ENT examined my vocal cords and said that they bow and do not completely come together when they should. He recommended “filler” injections into my cords but I chose instead to participate in speech therapy.  It has helped but has not fixed the problem completely. 

Check out Dr Suleman in McKinney. I’ve been seeing him for years. He is great. 

Did your doctor evaluate you for the possibility of having Ehlers-Danlos Syndrome. It can be associated with dysautonomia-but it can also cause aortic dissections and you mentioned that is how your dad passed away.  Please look up some information about EDS and ask your doctor about it at your next visit.  Just to cover all your bases. 

I get all the eye symptoms as well as well as the red swollen fingers. That’s from venous pooling.  I can’t get my rings off anymore. Someday I’m going to have to get them cut off!

I was diagnosed with temporal lobe epilepsy about the same time I was diagnosed with POTS.  I went to the neurologist bz of memory loss and missing periods of time and my EEG was abnormal. I take Keppra and Lyrica to prevent any further seizures. 

I have neuropathy in my feet for which I was originally prescribed Lyrica. Gradually I increased my dose to 350 mg a day in divided doses my my feet where still so painful. When I was prescribed Cybalta I finally got some relief. Before I go to bed at night I also use a topical essential oil cream that I get from DoTERRA called Deep Blue.  

My doctor told me that many people with POTS complain about these symptoms when the body is cranking out extra Norepe to combat orthostatic changes.  He did ask me to borrow someone’ps glucometer and check my blood sugar level when I get those symptoms. For me however my glucose levels do drop to the low 40s when I am symptomatic.  So now I try to avoid concentrated sugars and I don’t have to much trouble anymore. 

It is possible that your heart rate slowed down too much. Did you happen to check your heart rate while you were having that reaction?

I have been diagnosed with CVID and have been giving myself SQ immunoglobulin infusions every week for about a year. Maybe it's something you could check out with your doctor. 

Nitroglycerin causes relaxation and dilation of blood vessels which leads to hypotension, especially orthostatic hypotension. I'm not sure what role it would ever play in the treatment of POTS.

A common effect of narcotics is nausea and vomiting. If you try to take it with some food you might tolerate it better. You can also tell your surgeon that Hydrocodone makes you nauseous and ask for a prescription for an anti nausea medication.

As an an RN, and someone who has had a DVT, it is an emergency and you should go to the ER now and have it evaluated. If it is a DVT and becomes loose and dislodges, it can travel to your lungs and be fatal. Please, please, please go to the ER.

I tested homozygous for the MTHFR defect that decreases your ability to break down folate into its usable form. I also have a lot of neurological issues-epilepsy,a POTS, progressive polyneuropathy-so I thought I was really onto a solution. Then another one of my doctors repeated the test through a different lab and it showed that I did not have the defect.

So now I'm not sure what to do about these conflicting results. I'll be watching this thread with great interest. I know there are a few members of Dinet that have this genetic defect. I will be interested to hear what they have to say about appropriate treatment.

I'm 56 and still having symptoms.

Arizona Girl

I tested homozygous for MTHFR1298 and have slightly elevated homocysteine. I was referred to a hematologist for advise and he repeated the test at a different lab and it came back negative for the MTHFR defect. Any thoughts?

I had unequal pupils all my adult life but over the last few years they have gone back to normal. I have no idea why I ever had this.

Did you ever get the pulse oximeter to see if your oxygen levels are low?

I'm sure he got antibiotics very quickly when he arrived in the ER and he got better in 12 hours. That makes me wonder if it is not some sort of hidden infection.

I get that whooshing also. It's not really a sound, more like a sensation. It will happen a lot for a few days and then go away for weeks and then come back for more a few more days. I have no idea what causes it.

I'm thinking that the 24 hour holter moniter will be really helpful to you. I know you say that your heart rate gets really high, esp when you go upstairs. All these episodes of tachycardia will be recorded and you will have a sheet of paper where you will be able to write down how you feel and what you are doing. When they analyse the recording they will look at everything during the whole 24 hours and will specifically look at what your heart is doing when you make comments.

And the reason that I suggested the pulse oximeter was not as a replacement for care from a physician but so that you would have concrete evidence to take to your physician.

Hang in there. We are all thinking about you. Hope you have a great movie night with your husband.

You could buy a pulse oximetrer. It measures your oxygen saturation as well as your heart rate. You can buy it at a drug store, Walmart, etc... I saw one at Vostco the other day.

He suggests a high protein diet to help get the albumin level in your blood higher. This will increase your oncotic pressure and will allow you to retain more fluid in your blood vessels.