Need Help With 12Yr Old Daughter's Symptoms Please

[sue.zee.q]

Hello,

We are in the worst crisis of our lives and are desperate to help our daughter feel better. It all started 7 weeks ago with a relentless severe headache we thought was a migraine. She was so weak she could barely walk 10 ft and after 12hrs sleep was still exhausted. She is usually a very active and athletic kid. After treating her for migraines with everything they could and two MRI's the neurologist tested her for POTS. Her heart rate jumped 41beats/min. They tried to do an LP but it was too painful. We started the high salt diet and she had the best day in weeks. Although she was complaining of severe back pain. A few days later they brought her to OR to do the LP and things have gone back downhill. The pressure in her head was measured and was very high so they did an emergency CT scan which was normal. They are now thinking she had a weird reaction to the anesthetic that raised the pressure. All the labs are coming back normal. She still has a severe headache and nausea. I am having trouble getting the salt and fluids into her and her backache is keeping her awake at night. Is the backache from the salt? We tried compression socks from the running store but it seemd to make her feel worse even though it made her legs feel "lighter". I think it might have been the struggle to get them on. Her headache from the spinal tap is unbearable if she sits up even after 4 days. She has also developed slightly blurred vision.

I can see a strong family history now that I am aware of POTS but no one has it to this severity.

She is becoming socially isolated because she cannot go to school or even leave the house.If she has a friend over to play video games it is too much and she is in agony after they leave. I am worried beyond belief. Please help me understand how to help these symptoms of back pain, dizziness and headache.

[Katybug]

Hi sue.zee.q,

I'm so sorry you and your family, and especially your daughter, are going through this.

I do not want to alarm you, but you may want to make them verify that there is not a continued spinal fluid leak at the site of the LP. I know 2 people who this has happened to and it caused them continued headache and back pain after the LP. I know it was addressed for them, but I honestly don't know how.

I have heard of POTS itself causing "coat hanger pain" at the top of the back across the shoulders and slightly up the neck. It literally it the shape of a coat hanger if you were to hold the hanger at the neck and let it rest across the upper back and shoulders. I find that rotating ice and heat helps me with this pain. I also have chronic daily migraine and if the migraine is bad, I can't tolerate the heat, but the ice around my neck and at the base of my skull helps me a lot with both the pain and the migraine. Additionally, because I have some hematology complications I am limited in the meds I can take for my migraines, so I just started working with a physical therapist last week to see if we can alleviate some of the extraneous pain that I have developed from the constant migraines. This might be an option to help with pain until you get to the bottom of the problem. It's not a miracle cure but it does help with some of the back and neck pain.

I will send you a private message regarding compression wear. You will see a little red flag at the top left near the login I found to retrieve that message.

Also, there are neurologist's that specialize in headaches and migraines. I will find a link to a physician list for that and post it here shortly so you can see if there is one in your area.

And, finally, here is our physicians list to help you find a dysautonomia specialist in your area. Very few doctors outside of those who specialize in dysautonomia understand the syndromes and the appropriate treatments. http://dinet.org/index.php/physician-list?view=physicians

I'll get you some more resources shortly.

Take care,

Katie

[MomtoGiuliana]

I'm so sorry your daughter is having such a hard time.

Back pain is not a typical POTS symptom although Katybug makes a good point about coat hanger pain. (Here is a list of typical symptoms in case it is helpful http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms).

I do know that it can take time to recover from a spinal tap. A friend of mine who is otherwise healthy had one this summer and I know she was wretched for days. Also, it seems that those of us with POTS can take longer than normal to recover from any medical procedure.

Medical compression stockings might be more effective for her.

Blurred vision can be a POTS symptoms, as can dizziness and headache. And nausea. I experienced all of these, associated with POTS. Many members on here also note having these symptoms. Perhaps some of this will ease as she recovers from the LP.

For most POTS patients, salt and fluid intake seems to help.

Receiving saline thru IV often helps many of us as well. This might be something to explore w her doctor.

There are many medical treatment options for POTS--it can take time to find what works for each individual.

Has your daughter been seen by a specialist in autonomic dysfunction?

[Katybug]

Here is a link to headache specialists around the country. I can only give feedback on one in Maryland as that's where I am. Other members might have recommendations depending on where you are located.

http://www.headaches.org/physician-finder/

[sue.zee.q]

She is seeing a headache/migraine specialist. We have not seen an autonomic doc yet. We are in Alberta. There is a centre in Edmonton. We don't have an absolute diagnosis yet. I was impressed she even knew about POTS! I have had severe migraines (and weird symptoms) my whole live and no one has ever tested me. They are also testing her for Lyme and ID has seen here but don't suspect Lyme and everything is coming back normal. Maybe her back is just sore from not moving around. I was suspecting that she might have a leak. I am also a nurse. But they usually resolve by themselves, just takes more time.

[ks42]

First of all, I second what Katy said about complications from the LP. Symptoms of head pressure, backache, blurred vision can indicate a complication from the LP, like a minor spinal fluid leak (which are sometimes hard to catch), or it could just be that she's having a rough recovery from it.

The compression stockings might work better after she's had a couple weeks or so to recover from the LP, although they actually don't work for everyone. They make me worse because my vessels are very near the surface and collapse too easily, so they reduce my circulating oxygen below 90% (not good!), even at mild compression, making me nauseous, dizzy, and on the verge of passing out. The don't decrease my standing heart rate either.

The other thing I thought of, though - it looks like the backache may have started before the LP, is that correct? If so, did they thoroughly evaluate her kidneys? Kidney evaluation might include imaging tests like ultrasound or CT, urinalysis or urine culture, bloodwork, and a physical exam where they tap on the mid-back region to see if the kidney area is tender. Kidney infection, kidney stones, and other similar issues could all cause back pain like you describe, and could be brought on or exacerbated by a high salt intake. Of course, that may not be it at all - there are a million other things that can cause back pain like that, but it's something that might be worth considering.

[Clb75]

My husband had a leak from a spinal tap once along with a severe headache and had to get a plug to patch the hole where the leak was from. I forgot the whole process but it was done by the people who did the spinal tap. Also I think they sometimes give a caffeine IV for this too at the ER.

[sue.zee.q]

thank you all so much. I have a call in to the doc about possible spinal leak. Hopefully get some answers. That was exactly what happened with the socks! It was like she was low on oxygen! She started feeling like passing out and couldn't stop yawning!

[sue.zee.q]

quick question, if they give her caffeine will that make the POTS symptoms worse?

[Katybug]

Caffeine seems to be a double edged sword for POTS patients. I can have small amounts that help my migraines and help vasoconstrict me a little which helps. But, if I have too much, I can exacerbate my tachycardia and trigger my tremors.

I can do a 10 oz. cup of half caffeine coffee or 12 oz. Coke over the course of an hour or more and be ok. Any more and I will get sick. It took a little experimentation to find the sweet spot.

[ks42]

I've talked to several POTS patients who can do small amounts of caffeine, as Katy mentioned. I personally cannot. I'm so extremely hyperadrenergic that even a sip of a caffeinated beverage can send my heart rate over the edge (although I might be exaggerating a teensy bit when I say a sip - might be more like a few sips).

Yeah, my POTS doc didn't believe me about my intolerance to compression at first - I had to show him. I guess it's really not common!

[ramakentesh]

Lots of what you are describing may not necessarily be pots.

if her spinal fluid pressure was elevated she may have intracranial hypertension which can cause headache and postural symptoms.

most pots patients will improve for a short period after low or staggered amounts of caffeine. Too much can cause worsening tachycardia or rebound crashed

[looneymom]

My son was diagnosed with POTS when he was 11. The Tilt Table Test confirmed his POTS condition. He has also had a few spinal taps due to severe headaches but the taps did not bring any relief to the headaches. After one of those taps, he did have to go back in for a patch. If you suspect your daughter may have POTS, getting her to a specialist would be your next step. Before my son was diagnosed with POTS, he complained of back pain and joint pain. Does anyone in the family have EDS or CRPS? These conditions can also affect the POTS patient.

[sue.zee.q]

Thank you everyone for your responses. We went back to the hospital and saw the neurologist on call. She said that she thought the back pain was muscular and should be better soon. They tried to give her some morphine but she was feeling horrible with it so they stopped it. Seem ultra sensitive to medications like me. They don't believe the pressure on the spinal tap. They think it was a side effect of the anesthetic but sent her for eye exam with the neuro-opthamologist today. We have not heard the result from that yet but I think the tests were normal.

Now we are waiting for the diagnosis so we can move forward and get a doctor referral for the POTS centre here. The salt and fluids help but we are only giving her about 2g of salt. I find it very hard to get it in her diet. We bought salt capsules but she seems worse with those? Has anyone experienced that? They are only 1 g. Make her quite nauseated even if taken with food. Why would the dietary salt make her look so much better but the capsules make her worse? Also noticed any sugar makes her worse. When they did the standing test her heart rate went up by 41.

I think my sister has EDS what is CRPS?

Thank you

[sue.zee.q]

just heard back no indication of pressure in her head.

[ks42]

Sugar is a trigger for a lot of neurological and metabolic conditions for many reasons. It flares me so badly I can't have it in my diet to the point where I even have to cut out high glycemic foods, like certain fruits, honey, molasses, etc.

As far as the salt tablets - I can't take them either. The salt in salt tablets is sometimes mixed with large amounts of other things (like potassium chloride). Technically, potassium chloride is good as it offsets the potassium depletion you might get from Florinef, and is an essential electrolyte to balance salt intake, but my doctor actually told me some patients can't handle that much potassium chloride (at least not in the form / amount in the Thermotabs I was taking). The other issue is a lot of us have sensitivities to chemicals and additives. There are a lot of additives in some salt tablets (like maltodextrin and other things) that can also flare POTS for some people. I was one of those patients - taking salt tabs made my tachycardia worse for several reasons. I find I handle sea salt the best, so I use mostly sea salt, sometimes table salt, and make my own electrolyte / sodium solution with sea salt and an electrolyte formula (like Elete). That's worked the best for me so far.

I do know some POTS patients have had amazing luck with salt tabs, though, so maybe trying a different kind, or trying less at a time (can you cut the tablets in half or quarters?) might help.

[sue.zee.q]

I was thinking of making one as well but how do you make it palatable without sugar? For sure I have noticed she doesn't tolerate the capsules at all. She has been doing well with pretzels, chicken soup and salty eggs.

[Katybug]

CRPS is chronic regional pain syndrome.

It is common for people to experience nausea with salt tabs. If you do a search of the forums, you should find past threads discussing ways to manage both this nausea and how to get adequate salt intake if she can't tolerate the tabs. I would copy and paste for you, but there are too many threads for that. Many have lists of foods people use to boost their intake.

[ks42]

I happen to like the taste of salt water, lol, so my drink is basically 1/4 teaspoon fine ground sea salt in 16 oz water combined with about 30 drops Elete electrolytes. Sometimes I'll use more salt depending on what I need that day. If I want to flavor it, I'll infuse it with strawberry or cucumber or something, or I'll just add a little bit of juice. Or, if I use a different electrolyte packet instead of Elete (like the electrolyte-only Emergen-C, Celtic Sea Salt electrolyte mix, or Nuun which has stevia), I will get enough flavor and sweetness from those without sugar. I don't usually use Nuun, though, it's just an occasional thing, as I don't do well with much stevia.

For variety, I also drink at least 8 oz of broth during the day, and 8 oz coconut water (both have sodium and electrolytes). I think those both really help a lot too.

Also, I alternate sodium/electrolyte drinks with plain water as per my physician, so I do get a break from the salt, fortunately

[looneymom]

Have you tried thermotabs? They are a buffered salt tablet and easier on the stomach. My son can take 3 of them with a cup of water or G2 when his blood pressures get too low.

[sue.zee.q]

Great thank you for those tips on getting in the salt. Will give those all a try. Today was a much easier day getting the salt in. I was able to add 1/4 tsp to her scrambled eggs this morning which made it a whole lot easier to get the last 1 tsp in through the rest of the day. Her migraine is still not easing up and the doc was going to switch her flunarazine to elavil this weekend. But this has been the best she has looked in weeks so I don't want to change anything yet since we have only been on the salt diet since Friday. I also read that POTS pts don't do well with elavil because it increases heart rate? I thought with the fluids and salt the headache would go away :-( She has had it for 8 weeks.