Medication prescribed for DS making him feel worse

[ThePandoricaAwakes]

I’m hoping someone might have had a similar experience or can advise on next steps because we’re feeling really stuck.
For the past six months, my 14-year-old son has been dealing with:

• Headaches
• Dizziness
• Exhaustion
• Heart palpitations

We’ve been back and forth to the GP multiple times and have been told different things each time (iron deficiency, vitamin D deficiency, hormones, stress). He increased his supplements but nothing changed. At a routine asthma review, the ANP found his blood pressure was very high and his heart rate was around 160 bpm. She checked his records and saw the same thing had been recorded at his previous review, but no one mentioned it. She asked us to monitor his BP and heart rate for a week, wasn’t happy with the results, and referred us to the hospital. She also told us to go to A&E if his symptoms worsened. A few weeks later, school rang because his heart rate was so fast he could barely stand. We went to A&E, and they brought him straight through and admitted him overnight for monitoring. His blood tests were normal, but his BP and heart rate stayed high. The nurses seemed concerned, but the consultant the next morning spent about a minute with him, said it was migraines, and prescribed Topomax (not licensed for under-18s). Follow-up appointment is in January. He had a 72-hour Holter monitor last week, but again we won’t hear anything until January. In the meantime, he now has daily headaches and constant dizziness. The GP keeps saying the medication can take up to three months to work and that we should just wait. They’ve also suggested anxiety, but these symptoms started long before he became anxious about everything. He’s missing a lot of school and struggling when he does go in. We just don’t feel listened to, and I’m at a loss about what to do next. Has anyone been through something similar, or have any advice on where we can go from here?

My son was on topomax from age 11 for severe migraine. It is licensed only for epilepsy in under 18s but is prescribed for migraine. Because of that our GP wouldn’t give the prescription so we had to go to hospital pharmacy for it. Difference is though, much as it was initially hard to take and had side effects, it really worked. It helped very quickly and did so for years. He later changed medication at age 18.

It doesn’t sound like it is what your son needs. I really hope you get to the bottom of what’s wrong.

Side effects from topiramate are very very common and it can result in the medication not being tolerated.

Please speak to the prescribing Dr about the dose as a slow titration is recommended.

@nicky2512 yes I agree, I don't think he's having migraines, I feel like we're being fobbed off

I think you are being fobbed off. I assume he had an ECG when he was at the hospital. Did this show up anything apart from the high heart rate?

@Treylime yes he did and he also had a 72hr one lat week. They said other than how fast it is, it looks fairly normal, which I guess is good, but it doesn't get to the bottom of it

Are you still monitoring his heart rate and BP? I would keep a record to show they are constantly high and if you think either is really too high go to A&E again. Did they not give him anything to control the high BP?

I get white coat syndrome so my blood pressure is always high if a doctor or nurse take it but pretty much fine when I take it myself. I'm not at all worried about doctors so no idea what causes it. My DH gets supraventricular tachycardia which causes extremely high heart rate, but only happens once in a while and he has been told to go to A&E if it doesn't recover very quickly.

@BadgernTheGarden yes we are still monitoring and keeping a note of it. Unfortunately they didn't prescribe anything for BP just migraines, which I'm convinced he's not having!

Should also say my son’s symptoms were nothing like yours. He had severe pain behind his ears, rushing sound in his ears all the time like blood flow, sickness and bad vertigo. Topomax made a big difference very quickly.

Is his HR affected from changing position - from sitting to standing or does he feel worse if he raises his arms above his head? Have they considered POTS (Postural Orthostatic Tachycardia syndrome?). A tilt table test would confirm this.

Has his thyroid been checked because those things sound like a possible overactive thyroid to me. I'm not a doctor obviously but I had these symptoms and though I did have low vitamin levels it was the thyroid that was causing them

I am a bit stunned that they discharged him if his heart beat was still so high. dh had high heart beat earlier in the year and the ward would not even accept him until A&E had managed to lower it with drugs. He avoided a cardioversion as it then appeared to normalise with beta blockers.

BUT also to say I would ask for an echocardiogram. It turns out several months after his initial high heart rate that dh had an atrial tear which was picked up with this test and could have been the cause / consequence of the fast heartbeat. Perhaps unlikely as your ds is much younger than dh but other heart problems do need to be eliminated.

@FMLpassthegin yes his BP and heartrate go up considerably when he stands. I did mention POTS (as his symptoms are very similar) to the consultant but she dismissed it straight away!

@OneInEight yes I was too, but they were very dismissive, they said it was not unusual for someone of his age to have a heart rate so fast!

Maybe film him and record his BP going up from change of position and do this a few times so that the evidence is definitive and then demand a tilt table test? Also you could try giving him electrolytes and salty food (salted popcorn etc) as this is meant to help symptoms of POTS and see if that helps him feel better and then if it does, maybe this will also give you more evidence if you think this might be a possibility of what might be wrong? Google writes: "Increasing salt and fluid intake is a common non-pharmacological treatment for POTS symptoms because it increases blood volume, which helps with dizziness, fainting, and fatigue. A typical recommendation is to consume 2-3 liters of fluid and 3-5 grams of salt (or more) per day, but this amount varies by individual and should be done under the guidance of a healthcare provider. Salt can be added to food, or salt tablets and electrolyte drinks can be used if dietary intake is insufficient or causes stomach upset. "

@FMLpassthegin that's actually a really good idea, thank you. I'll also try increasing salt intake

Migraine my arse!

Ring the British Heart Foundation helpline: 0808 802 1234
Describe the situation and ask advice as to what to do next.
I have a heart rhythm problem and the nurses at the end of the line are always very helpful. Battling my way through the NHS system to try and get joined up care has been so very difficult.
Your son needs to see a pediatric cardiologist. You may find yourself fighting his corner - I am afraid that is how it is with the NHS right now.

Most consultants are still very dismissive of POTS and it can be hard to get anyone to help. I am impressed though at the speed of treating what they think are migraines - we are two years in and still working our way slowly up the treatment options!

POTS uk have a great website where you can look at symptoms / tests etc. Sometimes POTS is a result of other things that need to be ruled out eg adrenal insufficiency also may be worth looking at that so you are armed with options before your next appointment.

Has he had an ECHO done to check the structure and function of his heart?

Also has he had bloods done for vitamin b12 or thyroid?

His symptoms sound very like my dad's who is obviously much older but he has pernicious anaemia and is so much better now he has vitamin b12 injections. Worth a try although any decent GP should have done bloods for this by now you would hope!

Dd coud not tolerate topomax. Madeher v anxious and suicidal

Ask about other options eg

Propanolol

Pizotifen

Both prescribed to kids for migraine disorder

These symptoms haven't come on since a change in asthma medication, have they? Earlier this year I had a whole raft of odd symptoms including very high blood pressure. Finally I realised it was related to my surgery changing my inhaler.

@cestlavielife this is what I'm worried about - he's an anxious child but his anxiety has increased loads since he started topomax. They wouldn't give him Propanolol as he has asthma

@MustBeDueSomeBetterFeet no his asthma medication hasn't changed recently, probably a couple of years ago

Crikey - that is utter rubbish. A heart rate of 160/min is so far off normal 😡

I would be getting a second opinion asap

My first thought was POTs OP.

I felt absolutely dreadful on Topomax (for migraine), even with incredibly slow dose titration.