Bad weekend with ET had a bad weekend. Nightmares and screaming in sleep. Bones/joints ached all over, even laying in bed over night. This morning Experiencing visual disturbance like migraine but no headache. Have ET jak 2 +. On hydroxycarbamide
Anyone else have spells like this? Will just rest today and hope it passes quickly.
I had to leave work early yesterday bc I couldn't take the pain any more. It was my bones, joints, and muscles. I'm on Cymbalta for my pain which usually helps but it wasn't touching the pain yesterday. My pain tends to be more weight bearing so as soon as I get off my feet the pain gets dramatically better. My pain waxes and wanes and has no rhyme or reason. For this reason it is difficult for me to make plans to do anything as I will never know how I will feel that day. I hope you feel better soon.
That’s rough clubdino, the unpredictability is hard to deal with, can totally empathise with that 💚
Antihistamines might be as useful as a chocolate teapot for severe pain like yours, but could be worth a try.
patientpower.info/myeloprol...
I found this a very interesting read. Thank you.
I forgot that I read about this before. I'm gonna try it out. Thanks!
Let us know how you get on!
I definitely will. I popped a claritin a few hours ago. 😊
Hey you. Just wanted to say that I have been taking both certrizine and loratadine since you posted that paper and I have experienced a 💥dramatic💥reduction in my pain. I also started taking a magnesium supplement around the same time so I can't pinpoint which medication/supplement is helping so much or if they are working in tandem. Eventually I will stop the magnesium to see if it's just the antihistamines that are helping so dramatically. The pain didn't go away overnight but took about a week.
Thank you so much for posting that info. Now if the dreaded fatigue will go away I can feel like a normal person again. ❤
Oh that’s fabulous news!!! I’m absolutely thrilled for you 🙌🏻💚
Oh dear that’s debilitating. Does your heamo know what you are experiencing ?
I hate to say it but I haven't seen a hematologist in years. I know I need to find a new one but I've been a bit depressed for awhile now and it makes it hard for me to get up the initiative to do anything.
if i recall correctly you live near Johns Hopkins in Baltimore. The MPN Clinic there is one of the best in the country. I see Dr. Braunstein, who is a great doc. He is definitely tunes into the secondary symptoms we experience with MPNs.
Hope you find relief soon.
I had an appt to see a new hemo there and then covid happened and they only wanted to do phone consults which I do not like bc I am hard of hearing and that combined with having a doctor with a foreign accent wasn't going to work well with me. Now it's just a matter of calling my regular doctor to start the process all over again and see if they are accepting patients in person again. My regular doctors office is part of the Johns Hopkins system.
When dealing with the hospital before they absolutely did not let me pick a doctor there. They had me send all my records there and then the doctors consulted together to see who would see me. That is what was explained to me anyway. Thank you for the well wishes.
I was able to select the doctor of my choice. I did do a tele-video appointment in the midst of COVID which was WAY better than a phone call. By last visit with Dr. Braunstein was live. Hope you get an appointment soon.
I have regular phone calls but will ask for an appointment next time.
Yes I understand the low mood. Has it been your choice not to see one? How are you being monitored? X
I don't have much faith in the medical system so initially that was my reason for not seeing a hematologist in awhile. My ET hasn't really progressed numbers wise in 16 years now so that is another reason. I last had bloodwork done probably 8 months ago at my regular doctors office and it looked ok. My refills on my pain meds will end eventually and I will be forced to see the doctor so it won't be too much longer.
Hello HazyBlue yes l can relate and empathise with some of what your going through. My health journey incorporates much self healing through meditation,EFT, counselling, Osteopath, and nutrition.The nights can still be difficult for me so lts important to remind myself to be compassionate towards myself and use the many self healing skills which are available. Peace andKind regards
Adiewon
Vision is settling down nowTai chi usually for me today ,because of the visual disturbance today I’ve had to miss it. We do 40 mins Tai Chi and ten minutes meditation and I find it very useful. Useful to know other people have the same problem with ET. Some GP ‘s dismiss the symptoms and make us feel we don’t know what we are talking about and experiencing. I do have a good haematologist in Barnstaple though.
Great sounds like you have a good network of support that will help keep you on track,this health site is also a great resource.
👍
Glad to hear you found this resource. I also practice Qigong, which includes Taiji Quan (Tai Chi). Other forms include the 10 form Taiji qigong, the Eight brocades, and the Six Healing sounds. Both the external and internal forms are quite useful in promoting health and healing. The line between Qigong and Neigong (internal practices) is a bit fuzzy, but both are incredibly helpful.
Glad you brought Tai Chi up as a resource. many people with MPNs would find it helpful. It really helps to have a knowledgeable Sifu (teacher) to guide your learning and practice.
All the best.
That’s really tough HazeBlue 💚
I’ve had visual disturbance for +15 years after a major clot, was only since ET diagnosis that I learned it’s not secondary epilepsy (as originally thought), but a form of migraine and a known symptom of ET. I find drinking a spoon of powdered glucose in orange juice and a short nap clears it for me. No idea why but it works!
Bone/Joint pain a regular occurrence for me since starting Peg Interferon. MPN experts from MD Anderson Cancer Center recommend particular antihistamines.
patientpower.info/myeloprol...
I’ve tried them and so far they seem to be helping.
Hope you’re feeling better soon 💚
As IrishSarah has already said, the unpredictability is one of the hardest things.Have experienced all of what you say on occasions but, as often said on here, it’s hard to know exactly what are symptoms of ET, what are symptoms of treatments & what is totally unconnected to ET.
Each time I see my consultant I do a fairly detailed questionnaire on how I’m feeling in various departments which helps them in giving advice / recommendations-so definitely make a note of any regular experiences & tell your heamo 👍
Hi HazeBlue,I too get night sweats and wake from them very sudden, feeling distressed and almost panicky feeling. I struggle to get back to sleep soon due to this, takes me time to get back into a state of calm and sleepiness. Been very sleep deprived because of it.
My night sweats used to be more occasional, whereas the last year or so it's more that the good nights are more occasional. Have started on HRT (patch) recently, to see if menopause is contributing, and HRT might ease the symptoms, but it's too soon to tell right at the moment.
I've had bone pain around 6 years, also worse at night, and joint pain since around 4 years ago. The joint pain in my case seems to be the ET cytokine storms/over-response to my (was mild) osteoarthritis. This ET 'attacking' my joints is worsening the arthritis. As I understand it, bone pain is a primary ET symptom, whereas joint pain is not. It is in my case a secondary symptom, caused by the ET causing our blood to overreact to inflammation. It is worth speaking to your haematologist about this, I've now been referred to rheumatology to see what is going on with my joints.
I've had my eyes going blurry or struggling to focus at times every day for over a year. I thought it was them getting tired because I hadn't got my eyes checked when due because of Covid and lockdown. Have now had them checked, got new glasses, but it's made no difference. being tired does make it worse, and resting them sometimes helps.
It's all difficult and upsetting to have to cope with when it's bad, my thoughts are with you, x
I have had severe spinal/hip/thigh/knee pain for about 3 weeks -on and off.I thought it was arthritis -so have been taking painkillers (Ibupofen -which I know I should be taking as have ET-told consultant only take them if and when necessary.Otherwise take paracetamol-(tried co-codamol couldn't get on with them- kept me awake all night!!
Yes, all of this including sleep disturbance but no sleep terrors.
I hope you feel better soon.
Cheers,
Uz
Sounds like you are experiencing several MPN related issues.
Spikes in joint pain are something I experience too. I believe it is related to the cycles in the overproduction of inflammatory cytokines which the JAK2 mutation causes. I have had success with the use of several anti-inflammatory agents, including Curcumin, L-Glutathione, and SPM Active. An anti-inflammatory diet helps as well.
The migraine-like visual disturbances may in fact be migraines. Th medical term is acephalgic migraine with visual aura (AKA silent visual migraines). I experience those too, however mine are related to a brain tumor/surgery. I experience scintillation, scotoma, and both illusory and on one occasion hallucinatory palinopsia. Regardless, there are interventions for visual migraines too. My Integrative medicine doc recommended an increased dose of magnesium, which does help. I use Ubrelvy (a CGRP inhibitor) when minor events occur. This is a wonderful med that stops the visual migraines in their tracks.
I hope you are able to review your symptoms with a MPN Specialist soon. You may also find consultation with an Integrative or Functional Medicine doc helpful.
All the best.
I had the headaches and visual problems for a long time before the ET diagnoses. Now I get the visual disturbance with no headache. I sometimes feel like saying no to the drugs. They are toxic and to take for rest of life I wonder what damage hydroxy is doing. There again high risk of clots is worrying . I’ll keep taking the pills for now. Vision better today. Good to communicate on this forum. Thanks for replying.
Note the two different type of ocular migraines. Retinal migraines and visual migraines. Migraines that affect only one eye are usually a retinal phenomenon, caused by microvascular issues in the retina. Migraine aura that affects both eye is neurologically based. Migraine with or without headache is associated with MPNs. It can be one of the first symptoms people experience prior to being diagnosed. Migraine can, of course, occur independent of a MPN.
If you do indeed need cytoreduction to reduce risk or to control symptoms (not all of us do) then indeed the cytoreductive meds do each have a risk/benefit profile. I was unable to tolerate HU. I experience significant toxicity even at very low doses. I am tolerating Pegasys much better. We are each different in how we respond to these meds. I hope you find solutions that work for you without undue adverse effects.
HazeBlue you have a lot going on however maybe there are pieces to this puzzel still in the box. You mentioned Tai chi with meditation has helped. That may have reduced pressure on the vagus nerve that begins in the brain stem and wanders or is connected everywhere and is especially important connecting the gut to the brain. Critical for it's proper function is thiamine and magnesium to activate the thiamine. Sulbutiamine and TTFD are two forms of thiamine efficient in passing through the blood brain barrier. Benfotiamine is a thiamine form that may not be as good in the brain but is good in reaching and benefiting the eyes. In the brain if thiamine is insufficient nightmares, anxiety and migraines may be experienced. Thiamine reduces pain from fibromyalgia and may offer pain relief in the bones and joints. The B vitamins work better together. Be aware of anti-thiamine factors that impact thiamine. Using liposomal curcumin or a product like Curcuwin curcumin offers antiflammatory benefits and it is also a JAK2 /STAT inhibitor that decreases night sweats and maybe more. Vitamin C along with boron are bone builders that also do much more. Check out each for their benefits for your overall health. This is not to minimize the importance of all the other nutrients your body needs but to focus on some needed so the others can be available to your body and address the concerns you've mentioned. Always consult with your health care provider before using any supplement.
ncbi.nlm.nih.gov/pmc/articl...
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