This is a long post. I am just looking for answers and maybe someone here has had something similar:
I have ET and I had an episode on September 19th while at work. The pressure in my head had came on the day before but I woke feeling okay so I went to work. After teaching my first class I had to go sit down. The head pressure was causing dizziness. It progressed and I had to put my head down and my arms were numb and my legs went weak. They called the paramedics and I ended up in ER. The CT scan came up clear. They did blood work but didn’t seem to be too worried about my high platelets. I was sent home. My hematologist appointment didn’t go well. (I’m working on getting a new hematologist) He have me a prescription for Hydroxyurea to get my numbers down, but He said my symptoms were most likely not from my high platelets (969) and he referred me to a neurologist. The neurologist ordered an MRI of my brain and spine and it came back clear. My primary doctor ordered quite a bit of blood work looking for any underlying infections, auto immune conditions, thyroid, etc. Everything comes up good except my cholesterol was 224.
I am still having those symptoms off and on. Some days not at all, but the pressure in my head is right in the verge of coming back, always. When it does I can’t function. I get numbness in my arms and dizzy. The weakness in the legs hasn’t came back.
I haven’t been able to work. I am so upset and nobody seems to know what is going on.
I did start they Hydroxyurea 500 mg daily 11days ago. I was reluctant to take it that’s why I just started now. I realize it needs time to take affect. I have felt no improvement. Can it be a blood clot they aren’t finding? If it’s reduced blood flow to the brain why aren’t they finding anything? Any input would be great.
Sorry for the long post. Just looking for answers.
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I also can get that head pressure. I think it's a sensation that only MPN patients really understand. I felt something similar that almost took me to ER just before my Dx. It got marginally better then so I held off. I've also had that numbness and dizzy, as others here have also.
I had PLT over 1000 near my Dx. On HU it went down well, you can see my plot here. But it took a few months to get to normal. So it's possible your PLT level is causing the trouble (having ruled out other obvious reasons) and you will need another month or two to see the benefit of lower PLT.
Rather than just seek a new Hem, you should try to find an MPN specialist to oversee your care. Here is one of many helpful posts from member Hunter on what and where such specialists are:
Hello and thank you for your response. I have an appointment with my primary doctor today. I am going to see if I can go to an MPN specialist or if I need some sort of referral from her. I am not sure how this all works with insurance. I do have one picked out that is in San Diego. That is about an hour from my house.
I have been taking the Hydroxyurea for 11 days now. I don’t feel any different. My next hematologist appointment is on the 25th. I am still having the symptoms. They even wake me up at night. I really really hope it doesn’t take 2 months to improve.
Generally with US non-medicare, a PPO plan allows self referral to specialist, while an HMO plan requires referral. But no doubt there are exceptions as there are many flavors within these.
Good that you have reasonable access to an MPN specialist. Hope you can get some clear guidance from them.
I can sense your frustrations/worries in your post.
There is no doubt in my mind that your symptoms are related to your ET, and hopefully will get better once your platelet count comes down.
I was diagnosed with ET in 1999 and progressed to PV around 2016.
I have had similar experiences some days it feels like I have a tight band around my head, I also have other vibration sensations, all tests and scans have been ok.
For me the symptoms are worse when I am fatigued or stressed, I went to a shorter working week to eventually packing up and became a foster parent.
Find time for yourself, you are an expert on you, listen to your body stay well hydrated and take time to accept what is happening, it is easy for me to say don’t worry but please try not too, there is so much experience and info on this site I hope you can find the support you need.
Thank you for that. I would consider doing foster care too.
I teach fitness classes and work with senior citizens. I work in a 55+ community and I make my own hours. My work weeks are typically 20 hours per week. The problem is that it is a very active job. Now that this is happening to me I am very concerned that I may have an episode again and give them another huge scare. I LOVE my job. It is very rewarding and it means so much to not just me.
I had a clamped sensation in heasd for a long time before diagnosis. I fainted once after feeling really weird . Also had light headed feeling before platelets lowered, but both sensations come back if im not careful.
Do you find symptoms are less when you havnt got things to do?
Its a good chance for us to listen to what our bodies need. !!
I have had these episodes wake me up from a dead sleep. This is happening a lot now. I also had it come on strong yesterday just driving in the car to San Diego which is an hour from here. I almost pulled over and it was very scary. I should not have been driving but I felt great when we left.
So no, I don’t think it gets worse when I’m active. I guess it is good news since I teach and train Senior fitness for a living. I am usually very active. Can I ask what you are taking to keep your platelets down? Do you feel like when your platelets rise you have the headaches or can it sometimes just be too much activity?
dont want to worry you more than you are already, but I fainted whilst driving . I was lucky . . Swerved over road into a fence . I was just stopping at traffic lights.
no cars going the other way . The car wasn't even damaged . £20 to fix fence.
I think it's when I am tired. Platets now down to 540. From just over1000 a few months ago. I'm taking hydroxicarbamide 500 every other day.
tried lots of natural remedies for 2 years revisiting meds .
still take turkey tail mushrooms , CBD oil ,fish oil vit c and follow an anti inflammatory diet.
Hi Ssssfamily I have PV and have had all sorts of pressure in my head and suffer lots of headaches and migraines seen doctors and had brain scans and thankfully everything has been clear it has always been put down to migraines I also get terrible pain pressure in my nose which can be a warning sign of a on coming migraine I hope you can get some help theses pains are not nice I find it’s only aspirin that help me take care best wishes Poppy
As the others have stated, the symptoms you describe are known to occur with ET and other MPNs. The links to this information are too numerous to post. Unfortunately, MPNs are rare disorders and many docs, including hematologists, are unfamiliar with them. It is very important to consult with a MPN Specialist to receive optimal MPN care. Here are two lists.
Cytoreductive therapy along with aspirin can certainly help reduce the symptom burden. Note that there is much more to what is going on than just the number of platelets. It is about how the blood cells behave. There is also more going on than the overproduction of blood cells. There is also an overproduction of inflammatory cytokines. At the core, MPNs are inflammatory disorders. The overproduction of inflammatory cytokines is thought to cause many of the secondary symptoms we experience.
Thrombocytosis carries three primary risks:
1. Thrombosis - (clotting) - blood cells sticking to each other when they should not.
2. Hemorrhage - excessive bleeding and bruising. More platelets = more risk.
3. Microvascular symptoms - how the blood cells interact with the vascular endothelium. This can manifest as headaches, pressure, dizziness and other symptoms. The KISS explanation is that the blood cells are "too sticky" as they pass through the blood vessels.
The aspirin makes platelets "less sticky." Some people find that they need more than the typical 1 low-dose aspirin per day. Hydroxyurea can be an effective cytoreductive medication that can also help with microvascular symptoms. There are other options for cytoreduction of you prefer,
You are already planning to find a new hematologist. Ensuring the new doc is a MPN Specialist is very important. Your new doc can review your care plan to see if it is meeting your specific needs and preferences. You can review your aspirin doing, HU dosing, and all of the other options to treat ET. It really helps if you have a base of knowledge talking to your care team. There is some excellent information on the MPN Voice website. Here are a couple of articles that can also help you get started.
Thank you for bringing this subject up. I have PV and my platelets are a little high, as of my most recent doctor visit 2 months ago. I have issues with driving, especially on the expressways, that seem to correlate to my platelets being high, but when I bring this up to my hematologist and MPN specialist, they don't think it's my MPN that's causing my issues. I'm currently on hydroxyurea, 1000 mg. I have appointments coming up with both the hematologist and MPN specialist this month and if my platelets are not trending in the right direction, I will ask for them to increase my dosage or change my medicine. I have a job fair to go to today that's about a 40-minute drive on the expressways. I will have to be prepared to take the side roads, or forgo the event if I start experiencing issues.
personally I think your platelets are high. It takes a while to find the right dose of Hydroxicarbomide. Starting on 1 a day is normal for the first week. Increaseing until your platelets drop below 450
I just picked one from the list that I got from this group. (Thank you Hunter) Tiffany Tanaka UCSD-La Jolla. I called but I’m waiting for a call back. I am in the middle of trying to switch hematologists right now. It has been taking a long time. They finally approved the City of hope in Corona, Dr. Gilmore. I am excited for that as I really need guidance at this point.
The current hematologist told me my symptoms are not from the high platelets and he wasn’t sure what was going on with me. He sent me to a neurologist. He also gave me 500mg Hydroxyurea and said I can take it every day or every other, however I want. Then he said come back in 2 months. Also, he gave me no options on treatment and he never went over the BMB with me.
Can I ask you how you got lucky enough to see Dr. Jamieson? My primary doctor told me my insurance may not approve the referral for an MPN specialist. I am thinking I may have to pay out of pocket and just see the specialist once a year. This is all new to me. All I know is I can’t work and I need to start feeling better.
Any tips on dealing with insurance to see an MPN specialist would be great 😊
You will have to contact your insurance yourself and see if any specialist is in your network. Your primary care provider would have no idea if you'll be covered.
I had Blue Shield (Sharp Community Group) insurance and I could go online to my acct and search for specific providers to see if they are covered. I thought they'd never cover Jamieson as she was UCSD (and I had a Sharp HMO). But turns out my Blue Shield allowed for a "second opinion" with Jamieson. And then Jamieson simply took over from there. It took me a year to get in to see Dr. Jamieson and I will tell you it was worth the wait!! I fully believe she saved my life. My original "specialist" (only a regular hematologist) preferred a do-nothing (medically known as a "watch and wait") approach. I got in to Dr Jamieson, and she changed EVERYTHING. Promptly did a BMB to get the full picture and started me on meds. I feel a million times better now.
MPNs are absolutely playing a role in your described symptoms. Dizziness, headaches, body aches, numb hands and feet, FATIGUE are all classic symptoms. Any doc who tells you that those symptoms are not related to your MPN proves they have no idea about MPN. Though I think it is good to cover all bases and be sure it isn't due to other conditions. I am happy to help you figure out the SoCal system as best as I can. I would start off by saying you should try and get in to see Dr Catriona Jamieson. She is a world leader in the field. She runs a whole research lab specifically for MPNs. She's developed FDA-approved drugs for MPNs, she's run clinical trials and frankly her clinical understanding is unmatched.
How I got in to Jamieson? ---- I approached my (do-nothing) hematologist during an appt and said I want to be referred to specifically Dr Jamieson. Doc was fine with that and referred me as a "second opinion". My insurance covered it ( I never thought they would, but they did) and the rest was history. I also changed over my insurance during the yearly enrollment period to a UCSD group to streamline treatment from there on out.
I'm going to send you a private message and give you my email address. Please email me and I can offer more specific details and guidance. I want to help you get into a proper MPN specialist - You are worth it! For me getting MNP specialist care was life changing, if not life-saving.
It might be an issue that I don’t live in San Diego. I live in Menifee. My daughter lives in SD so I am out there all the time. This new doctor they are sending me to at City of Hope is my ‘second option.’
Ahh - It could be... but I was told by a nurse that the majority of Jamieson's patients are not San Diego residents. Check your private messages here for my email address and email me if you want. I don't check this website regularly, but I do get my emails.
Getting a referral took a lot of perseverance and administrative stuff moves at a snail pace. I think it is good you are being treated for your platelets now while you sort out the specialist. And also great that your primary doc has been thorough to check all your bloods and send you to a neurologist to make sure there isn't other underlying things happening.
I can only speak for myself, but I suffered from dizzy spells and blurred vision, but after being prescribed Hydroxy and my platlets lowering I have not suffered from these symptoms for 3 years, wish you well
Do you remember how long it took for the medication to take affect? I know we are all different and our dosage is different but just curious. I am so anxious to get back to work and working out.
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