Difficulty Swallowing And Feeling Of Being Strangled! Anybody Else?

[babettess]

Hi everyone,

I am new here and so anxious to interact with other people with dysautonomia. I was recently diagnosed with POTS and am at least no longer bedfast (at the moment). I spent 3 months unable to get out of bed without help. It took about 6 months to get the POTS dx. I guess I was dx'd earlier than many people are. I am just starting treatment and am hopeful that I will feel even better!

My tachycardia comes and goes as does my shortness of breath, dizziness, off-balance feeling, headaches, brainfog, shaking, inablility to stand and exercise intolerance. I have found the chest pain and pressure, neck pain, a feeling of being strangled, and being unable to get my swallowing action started the most bothersome symptoms on a day-to-day basis. I can't seem to get any of the doctors to get past the thought of my swallowing difficulty and feeling of being strangled as anything other than anxiety. I do have panic attacks on occasion but am not an anxious person at all. The swallowing problem is something I have had as long as I can remember. The dentist I saw as a child gave me exercises to do to try to improve my swallowing. I have problems getting the swallowing action to happen when I try to drink liquids. Not good for someone who needs to drink lots!! I also choke easily on liquids and even my own spit. The neck pain I feel is all around my neck but when the front muscles of my neck hurt the worst, the swallowing difficulty and the strangling sensation are at the worst. What I would like to know is if anybody else feels this, if they have ever been told what is making this happen and what type of a doctor made the dx??? Are these POTS symptoms?? I have seen neurology, endocrinology, ENT, cardiology, and a dentist. I have had a modified barium swallow. I was given Xanax for the neck tightness and stranglulation feeling but it did not help at all. Personally I think the muscles closest to my carotoid arteries are tight and are causing these sensations. I also wonder if my vagus nerve and my glossopharyngeal nerve have pressure on them from the tight muscles. I read somewhere that damage to the vagus nerve or carotoid arteries can cause ANS problems.

Any input will be appreciated as my doctors seem to be at a loss. Thanks for taking time to read this. I look forward to making new friends on here. Having people to talk to that are experiencing the same life as me will be such a blessing!!

With smiles,

Babette

[futurehope]

Hi, Babette, I'm from MD as well. Hopefully you've been to Hopkins? Have you consulted with a head/neck surgeon? They seem to know the inner workings of our neck region as part of their training. I'm assuming the neurologist you saw tested your blood for myasthenia gravis, right?

I suspect there is a cause for your swallowing difficulties beyond anxiety. I've heard that benzodiazepines (certain tranquilizers) can affect your nervous system. Are you on any medications that can have this affect? I hope someone can help you figure it out real soon. Best wishes.

Edited January 24, 2009 by flop
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[mjan]

Hello dear Babette~!

So very sorry for ALL you are going through. Makes me more grateful.

I too have had that kind of pressure.. in my chest.. and around my carotid. I end up in the ER.. and then dismissed.. But.. once when they admitted me.. thinking I had a stroke.. the PT gal I think is the one who recommended I get a swallowing test. Turns out I have GERD or acid reflux so bad it comes up to my collar bone. I had no idea as I do not get heartburn. Instead I get this pressure and tightness.. then cough and choke when trying to eat. So I present as if I am having a heart attack or stroke and its neither. I also "forget" to swallow and walk around for a few seconds or son with water in my mouth.

I had had the carotid ultrasound.. which was normal. Heart.. normal. So they just put up their hands.. and let you go as a patient.

NO ONE ELSE did anything about it though. I just report it. I see a nutritionist who treated the GERD and other symptoms and its better. Now I notice I can swallow ok but it goes down too slowly through the esophagus and seems trapped. Something else to explore.

It IS serious.. can choke.. aspirate to your lungs. ASK your doctor to do something about it.. ok hon?? It does sound more neruo than acid reflux but remember your digestive track is affected by the autnomic stuff too. Have you had a brain MRI too??

And come here.. for hugs and support.

Warmly Jan

[babettess]

Thanks for the responses! I have had a brain MRI, modified barium swallow, TTT,nerve conduction tests, EMG, VNG, chest CT scan to r/o pulmonary embolism, abdominal & pelvic ultrasounds and have given probably gallons of blood. Other than the vit D defiency, high pm cortosol, my nerves firing "very well", not being able to form a "bolus" as determined by the mod barium swallow and of course positive for POTS from TTT-everything comes back normal. The ENT says see Neuro, Neuro says see ENT and so on. I have not been to Johns Hopkins yet, though. I am going to see my favorite NP tomorrow and maybe see if she thinks Physical Therapy might help . When the muscles are calm in the front of my neck so is the swallowing difficulty and the chest/neck pressure that makes me feel like I'm being strangled. I will also ask her about GERD although I think it would have shown up on the modified barium swallow.

Thanks again for the responses. I'm thrilled to have found this forum!

With smiles,

Babette

[mjan]

Here I am so concerned.. wish I WAS the MD who could treat your problem !!

What did the Brain MRi show? Being on the MS forum thinking for 4 years that I had MS till they ruled it out..swallowing difficulties CAN be caused by the msucles not remembering how to work.. not getting the right connection from the brain .. to the esophagus not working properly either. Acid reflex makes this worse and worse.. so does the brain interferrence. All I know is that I saw my guro of a nutritionist and it got easier.. I stopped choking and gagging every time I tried to eat.

There is a technique you may want to google..where you put your chin down to make the muscles/nerves cooperate when swallowing. Also to keep food at small amts when eating.

My swallowing test they could SEE my mouth..throat.. esophagus and see how many times it took me to get the food down. So in my case I think.. it was a combo of the acid reflux problems.. and my esophagus not working properly.

Stay in touch.. and know that you are not alone k?

Jan

P.S. this is my 1st day on this forum

[juliegee]

Welcome Babette (& Jan)!

Sorry you've had to find us, but glad you did I, too have experienced swallowing difficulties and have had many of the tests you mentioned (and others!). Nothing too remarkable was ever found re. the swallowing- severe acid reflux (Jan may be on to something!) and a hiatal hernia may possibly contribute to it in my case. BUT after many years with POTS, I have just recently been diagnosed with mast cell activation disorder MCAD. This is one, of many, causes for POTS. I don't have mastocytosis, in which the patient has too many mast cells; instead the mast cells I do have are overly reactive. One of the ways that this manifests itself for me is with a tight throat, difficulty swallowing, etc. The treatment for MCAD is to take a combination of H-1 and H-2 antihistamines. Ranitidine (zantac) is an H-2 blocker that may treat any underlying acid reflux you may have AND it greatly helps with MCAD if this is what's contributing to your POTS and tight throat. Adding an OTC H-1, like zyrtec during the day or benadryl at night (helps you sleep) might also help. The combination is what is most effective if you are dealing with MCAD.

Beta-Blockers are a "No-No" for patients with MCAD. Have your symtoms improved or been exacerbated since you began your metopropol? If things have worsened you may want to switch to a calcium channel blocker that will also treat your irregular heart rate, but not aggravate an underlying MCAD.

Check out The Mastocytosis Society Website: www.tmsforacure.org to learn more about MCAD. The symptoms and treatment are identical with both mastocytosis and MCAD.

The fact that you have chemical sensitivities, POTS, tight throat, and panic symptoms all made me think of MCAD.

Sometimes when my throat is really tight, if I totally soften my facial muscles, the feeling is less severe- just a trick I thought I'd share.

Hope you get to the bottom of your symptoms soon

Julie

[ramakentesh]

if you have your carotid arteries ultrasounded during a tilt table test your doctor will find that they are being excessively constricted due to an overly reactive sympathetic nervous system and elevated norepinephrine levels.

[Radha]

can anything be done for this over active epinephrine activity except taking beta blockers? i have this problem too!

Radha

[babettess]

MCAD and visit to NP-

I went to my favorite NP today and she ordered an ultrasound of my carotoid arteries and a MRI of my neck/throat. I had not read some of the responses to my post or I would have asked her about the MCAD. She is soooo willing to hear anything I have to offer and she even admits that she had never heard of POTS until I was diagnosed. She actually appreciates that I am taking an active role in my health and doing some research on my own. And I got what I was hoping for.......She referred me to physical therapy for my neck pain and she also referred me to a doctor that treats POTS to get a second opinion. My current cardiologist is who dx'd me and although I really like him, I think he should have done more testing. I was not told what type of POTS I have or what it might be caused by. I am hoping to get some answers through all this new testing and by seeing a dr who treats POTS.

I have been on a beta blocker for over 20 years and always feel worse off of it. Although the chest pain & tightness and feeling like I'm being strangled started two days after starting metoprolol (after it was changed from Atenolol). Interesting?!?!?! I tried a calcium channel blocker once about 18 years ago and again about 5 months ago and both times it made me extremely ill and did not help with my heart rate.

Should I keep my eye out for any particular symptoms that would indicate a need for further testing for MCAD? My blood pressure doesn't ususally change much when I stand up and I have never noticed facial flushing other than having roseacea. Another interesting fact is that I feel much better after taking either Atarax or Benadryl. I always thought they made me feel better because they also have a calming effect. I mentioned this to my ENT doctor and he did some testing for allergies (RAST and IVIG, I think.) But all the testing he ordered came back normal.

Thanks for all of the responses. It's so nice to no longer be alone in this!!!

With smiles,

Babette

[flop]

Hi Babette, welcome to the forum!

One thing that struck me was that you said the throat tightness started soon after switching from Atenolol to Metoprolol. Atenolol and Metoprolol are both "cardioselective beta-blockers" meaning that they target Beta-1 receptors and are less likely to affect beta-2 receptors (beta-2 stimulation can cause airway narrowing/asthma and worsen allergy problems). Although both meds are in the category that is liss likely to cause allergy type problems you may well be experiencing a beta-2 effect from the Metoprolol. Have you tried going back to Atenolol to see if the problem goes away? May be worth asking your doctor/NP if you can try switching back.

For people with MCAD it is advised that beta-blockers are avoided or used with extreme caution.

Negative allergy tests such as RAST don't rule out MCAD, if anything having allergic symptoms with no apparent allergy triggers is more suggestive of MCAD (the mast cells misbehave and trigger allergic type responses, can happen at any time and not always due to an actual allergy).

I think that as MCAD is a relatively new concept that many allergists don't recognise it / accept it as a condition so you may need to see an expert to get a proper evaluation. Julie (Mack's Mom) has posted the link to the mastocytosis website which should be able to help more.

Flop