Greetings from Wales! New to the site so entered our 'request for help' in another section. I'm so pleased that we found ndrf - there is so little known about POTS over here.

My daughter was diagnosed with POTS shortly after her 15th birthday, this year. Unfortunately, she was diagnosed by a locum Neurologist who has since left the area and we're left with a Paediatrician who knows little about the illness and is of little help. I've probably learnt more through logging on to ndrf.

My daughter became ill in October 07 - blurred vision, nausea, headaches and dizziness. After several visits to our GP she was admitted to the local hospital for tests. She underwent X-rays, CT Scan and MRI Scan until finally she had a lumbar puncture. She was diagnosed with Benign Intercranial Hypertension (increased pressure in the fluid around the brain). She was well until January this year, when her symptoms returned. This was when we saw the locum Neurologist who diagnosed POTS, as her heart rate increased on standing (she also suffers with cold hands and feet). A 2nd lumbar puncture was carried out two weeks later as she was admitted to hospital with a severe migraine and, though the pressure was no where near as high as the first time, the headache ceased and she seemed to improve. He advised her to increase her intake of fluids and prescribed Pizotifen to help with her migraine.

Although the majority of her symptoms have ceased ie dizziness and blurred vision (she still experiences nausea in the morning), she is suffering with constant chest pains, breathlessness, tiredness and can "hear" her heartbeat/thud. The Paediatrician has prescribed Propranolol Beta Blokers (Pizotifen was stopped as it was having no effect). She is increasing the dosage every 3/4 days and is currently taking 60mg a day as our GP wanted to introduce it slowly. She's had an ECG which was normal but the Paediatrician has refused to monitor her heart during exercise. She has also been referred to a Resusciation Physiotherapist who confirmed that her heart is normal but acknowledged that her pulse races when standing.

I did mention "sodium" to the Paediatrician (after I checked out comments on ndrf) but she says that my daughter's sodium levels are ok.

My daughter is struggling with her concentration and her schooling is suffering. Her weight has increased dramatically as she is too tired to do any form of physical exercise. The medical professionals here don't seem to have any knowledge of the condition and don't seem interested in my daughter's general mental welbeing.

Can anyone advise me if we could be doing more to help her ie diet, types of exercise. Is this something that she has to "learn to live with"? Is there any light at the end of this tunnel? Does anyone know if Benign Intercranial Hypertension is connected to POTS??

Any advice would be greatly appreciated.

Thanks

Hi and welcome to this forum. I know that you will find this forum to be helpful and informative and I've even made friends due to this forum. I can relate to you because my 12 yr. old daughter has been struggling with POTS for almost 14 months now. She struggles with dizziness, difficulty walking, headaches, inability to sweat, and insomnia. At this point, she goes to school part-time and she also struggles with concentration. She hasn't sat up on her own since last fall when the POTS symptoms worsened.

Despite all of this, we do have hope that she will get better as many adolescents do with time. It sounds like you are already educating yourself and I would encourage you to continue to do that as many doctors have never heard of this and other dysautonomia issues. I know it may be an easy thing to say, but getting doctors who are knowledgeable about POTS or interested in learning about it, would be the best thing for you and your daughter. You need a doctor who is going to work hard to get your daughter better. Since I'm not familiar with Benign Intercrancial Hypertension, I can't give any help with that, but I can tell you other things. My daughter has physical therapy 2x a week in which they do strengthening exercises for her legs and arms. They might be able to do more with your daughter since she can sit up and move around more than my daughter. We also try to take her swimming as muc as she can handle and above all, we try to keep her feeling as "normal" as possible by having friends over as much as possible. One of the difficult things about POTS is that you never know how much to push the exercise and school. Some times my daughter seems to handle it fine and other times I know we did too much. There's that fine line and we're still learning. Also, thrown into the mix is the menstrual cycle which seems to worsen my daughter's symptoms.

I hope you find some of this helpful. My prayers go out to you and your family. If you want to e-mail me personally, I would love to talk to you. Nothing has helped me more than talking to other parents who completely understand what I'm going thru.

God bless and keep you,
Brenda

Hi...I am sorry to hear about your daughters condition. I don't know how much you know about benign intercranial pressure, but most of the symptoms your daughter is having can actually be being caused by this condition and not POTS. The 2 lumbar punctures relieved the pressure of the spinal fluid and that is why your daughter felt better afterwards. The lumbar punctures are pretty much the standard procedure to relieve the pressure until the cause can be identified. Unfortunately, in many cases the cause never gets identified, but the problem can go into remisssion states. If your daughter is still suffering with symptoms or if she should need another lumbar puncture then you probably need to ask the doctors about possibly putting a shunt in to stop this from happening again. The racing heart upon standing and some of the other problems that you say she is still having still could be from this original problem. You see, if the pressure is to high in the brain tissue it will leave no room for vascular blood flow, and then the heart has to work extra hard to get the blood flow through the brain, which in turn will give your daughter hypertension, tachy, and dizziness and nausea as well as a lot of other symptoms, especially when standing upright (this is because the spinal fluid flow is working against gravity). Even though this last time her spinal fluid wasn't as high as the first time, your daughter may have become more intuned to the symptoms of the fluid pressure rising. The 2nd lumbar puncture may not have removed enough of the fluid to give her complete relief and if she is starting to build up pressure again these symtoms will slowly increase in intensity as time goes on. This is where you may want to ask her doctors about other options to stop this from happening again and again.

Have your daughters doctors looked for a possible cause for the intercranial pressure? There are things to check like an obstructed spinal fluid flow, Guillian Barr syndrome, and Chiari Malformation, low grade chronic menengitis, inflammatory conditions, etc.. Sometimes if the underlying cause can be identified and resolved then the problem will not re- occur.

Until your doctors have ruled out a chronic benign intercranial hypertension that may even be due to an underlying condition, it would be hard to say if she truly has POTS, because the symptoms over lap so much. And POTS does not cause intercranial hypertension and from what I know intercranial hypertension does not cause POTS they would be two different entities that are taking place if she truly has them both.

My suggestion to you is to push your daughters docs to figure out why she has the benign intercranial hypertension. I would also push to make sure that something is done to prevent it again from happening and then I would look to find a doctor who specializes in this as well. You may want to get a second opinion on the POTS dx, just to make sure that you are not just dealing with one problem that has not been totally resolved.

In the meantime I will tell you that beta blockers given in high doses, which the amount your daughter is on is considred high, can cause dizziness, severe fatigue, weight gain, and muscle weakness (let me also just say that benign intercranial pressure can also cause these things as well). So, some of her problems may be be being made worse by the beta blockers. If your daughters heart rate is still high on this amount of BB, then you may want to have her re-evaluated for cerebral spinal fluid build-up again, which may be happening at a much slower pace but still enough that your daughter is reacting to the low amount of pressure that is building. You may also want to ask about changing her drug to Aldomet. It is not a BB it is an anti-cholernergic drug that lowers the heart rate more effectively in people who suffer from hyperadrenergic problems. Typically BB are not good for people who suffer from hyperadrenergic dysautonomias. In many cases it can make the symptoms worse, especailly the heart rate. You see, BB work to block the uptake of norepinephrine from the heart, but people who suffer from hyperadrenergic dysautonomias need the uptake inhibited in the brain, because our problem does not come from the hearts re-uptake. So, drugs like Aldomet inhibit the norepinephrine in the brain and are much more efective. You will also not experience all the side effects of the BB, such as the fatigue or weight gain, etc..

One last thing, you need to check with your doctor about the salt intake, because it is all most always contradicted in hyperadrenergic dysautonomias and as far as I know it is a BIG NO -NO , in intercranial hypertension. This is because your daughter is already retaining to much fluid or producing to much fluid or has an obstructed spinal to brain flow, so the last thing you want to do is further increase the fluid amount or the fluid retention, which salt will automatically raise the cerebral spinal fluid, even in a healthy person. A diet high in salt can further the hypertension and will definetely raise the intercranial pressure which can end in disaster, with a major stroke. So, please bring this up to your daughters doctor again before increasing her salt.

Well, I hope things get better for your daughter soon. I will tell you that I have two family members who suffer from benign intercranial pressure and both have had shunts put in, but are doing fairly well. I myself suffer from hyperadrenergic dysautonomia and have tried the BB and done disasterous on them. It took till I went to Vanderbilt and got a correct dx before being put on Aldomet which has been my saving grace. I also have been told to eliminate salt from my diet entirely, which before Vanderbilt I was told to increase salt, which made my BP and HR go through the roof. Vanderbilt told me that in the hyperadrenergic forms salt is contradicted and that I needed to eliminate it from diet. It is usually only indicated in the hypo forms of dyautonomia. I can tell you that my heart rate and Bp along with many of the same things your daughter suffers from have gotten better since adhereing to my docs protocol. Anyway, I hope things go better for your daughter.

My best to you and your daughter,
Joline

Thank you so much!!!! This is fantastic. It not only helps me understand the condition but it goes a long way to helping me as a Mum - I've been feeling pretty helpless in my "fight" to get information and help from the doctors over here. However, I do believe that the information that you can obtain from other people, rather than the medical profession, can be more helpful. I still can't believe my luck that I "slipped" upon ndrf - I'd been browsing the internet for a couple of months looking for a forum.

I have requested a re-referal to a Neurologist in Liverpool, who she did see at the time of her first lumbar puncture. I will approach this appointment and her next paediatric appointment much more confidently and, thanks to you all, I will have loads of questions and requests.


Joline, the information that you've provided re Intercranial Hypertension in invaluable. It's been worrying us that there is a link between the two. The Doctors only seem interested in POTS at the moment and when I query the Intercranial Hypertension they dismiss me. I will most definitely push for more information and assistance regarding this.

Thank you all so much. I feel much stronger and more positive.

I'll let you know how we get on.

Linda

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